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Included here are articles and stories written by readers or others.


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S 's story

Scared and confused

Hi, I was suffering with a prolapsed disc before Christmas when I started getting terrible pains in my stomach with dragging pains in the lower abdomen, also it was extremely painful to pass urine. My Doctor ordered blood tests, then an ultrasound and fibroids the size of a 10-12 week pregnancy were found.I had never heard of them before and when I went to see the first Consultant he gave me the big shock that I needed a total hysterectomy - I cried my eyes out and couldn't believe it, as by now I was not having any symptoms. I coped through Christmas and saw another Consultant who said I could leave alone for 3 months and see if they grew, or take the drug Esmya to shrink them for 3 months and have a keyhole hysterectomy. At first I said I'd take the drug, but when I went to get the prescription I panicked and couldn't. Also because of the pain of my back for the past 4 months I decided to leave and have another ultrasound in 3 months. In the meantime I am drastically looking for ulternatives to surgery as I'm so afraid and don't want to be cut about. I have spoken to the Consultant and he is looking into the possibility of Embolisation after I requested it, but because I have a pendunculated fibroid I'd still have to be cut to remove that one, before embolization for the rest, and that treatment doesn't sound very nice. I feel like I am a walking time bomb and really don't know what's best to do.

Crediton EX17 1EN  [2020-04-29 00:00:00]

Karen 's story

Multiple fibroids diagnosed after years of heavy bleeding and anemia

I was first diagnosed in 2008, i was looking after my dying father working and bringing up three children, needless to say that there was not much time to consider myself. I realised that my periods were extremely heavy but so hard to see GP just kept putting it out of my mind till I started bleeding again. Finally did something when I couldn't keep my eyes open when I got home from work.i was anemic and was given iron and tranExamic acid. That was it untill i did my own research and discovered novasure, I had to ask for this treatment which I had a few months later. I bleed for almost 5 weeks after, but once my periods returned to normal there was an improvement. That has changed and for the last 4 years my periods have got heavier again. Went to doctors a month ago am anemic again back on same medication. Had a vaginal ultrasound 2weeks ago have lots of fibroids the largest is 4cm but more worrying is that my endometrium is to thick. 14.9ml this apparently could be causing bleeding as well. I am now waiting to see a gynaecologist. Have stopped working as I feel tired and run down, but what I really hate is how useless I feel I\'m a physical person not wanting to sit still and find my energy levels so low that I barely achieve anything during the day. What good am I like this feel so fed up and tearful. Sorry if this went on to long needed to get it out.

Basildon ss13 3lg  [2015-09-11 10:52:47]

Shelley 's story

Recently diagnosed: suffering from heavy periods for years.

Hi, I have just found this website. I have had heavy periods since I was 15 ( now 35) & had many years on contraceptives. 3yrs go I had a coil but after a year it was pushed out, they wouldn't fit another & caused a bit of trauma. Since then I have piled on weight & had alot of pain. I had ultrasound last month showing a large 5cm+ fibroid in top part of my womb. The locum I saw was rather confusing & as I do want children but couldn't give an exact date they weren't that helpful. They wanted me to have marina coil but I am reluctant after the last time so offered me a mini pop. I am feeling really down and in alot of pain & now have to wear skirts or jogging bottoms to work as I sit down alot & cant wear jeans etc. The Drs say my weight gain ( bloating) isnt down to fibroid but I eat well & exercise so I think it is. Any help from you would be grateful as I dont seem to be getting through to the "specialists".. thanks :)

Axminster EX13 5DL  [2015-09-11 10:36:34]

Paula 's story

Heavy periods, fibroids made impossible to work and NHS not taking it serious enough!

After experiencing my own problems with heavy periods, fibroids and nhs lack of help and support over the years, I think we all should get together and sue the nhs for neglect of duty and care and generally forcing us women to live with unbearable and unreasonable symptoms and conditions. If these doctors and consultants had to live and work with the heavy periods and illness we do, they would not be able to do their jobs! Do they realise it is impossible to go to work when you have to visit a toilet every 20 mins of the day? The only job we could do is toilet attendant!

Bury St Edmunds IP29 4PJ  [2015-09-06 14:31:07]

Dawn 's story

My 10cm fibroid

I have been diagnosed today with a 10cm fibroid outside situ - I'm not too bothered as I had been immobilised with a back injury and now makes perfect sense - I have pain down my right side where the non malignant fibroid sits - I have just completed a moon walk in my 50th year and knew the psi was just there - put it down to back issues - I have had a brain tumour and removal in 2011 so to hear benign tumour growth I can deal with - the fibroid was diagnosed in 2009 but GP did not advise when I had an ultra sound from heavy bleeding - all fits into place - just wNt to share to ensure people enforce their checks -

Wheathampstead AL4 8EB  [2015-05-19 23:11:16]

Megan 's story

It's time to fight!

My names Megan, I'm 22 years old and around 8 months ago I got told I had a fibroid tumour at 10cm which is still growing. For around 2 years I got ignored by numerous doctors and hospitals saying there was nothing wrong, luckily after I kept going back as I new something wasn't right a trainee picked up on this straight away and my hospital appointment was with in two weeks. I've now had two operations in one, in which I got the results it wasn't removable due to the size and it been to dangerous to operate on me again. Sadly at 22, a hysterectomy is the last thing I want but sadly like many one of the only answers. I'm awaiting esyma to shrink my tumour by 40-70% but sadly many doctors and surgeons are refusing to treat me because of my age and size been to risky. At the moment I'm aware I have to pay; around £500 for the treatment or £8500 if I go fully private. Where are we meant to find these funds? This needs to be made aware, im 22 and like many the last thing I want is a hysterectomy. Currently due to the size and location I have been informed I currently can't have children and this has been proven. The pain isn't even describable, there's no life with this. Who can help us?

Settle, North Yorkshire Bd24 9bj  [2015-05-10 18:40:04]

G J 's story

Miss

HI I have a fibroid on my bladder is between 5 to 6 centimetres. The doctor advice me to have a operation he give me a leaflet to explain the operation. I read a tube is inserted to drain out any urine. I am a bit worried because I am still a virgin can they insert the tube in my tummy instead or do something else.

London SW9 6LT  [2015-04-21 18:16:43]

Mary 's story

UAE/UFE experience

I have been diagnosed with multiple fibroids the biggest of which is 7.5cm large or the size of a 12 weeks foetus. My consultant offered me a total hysterectomy due to my age. I am 62 years old. I wasn't happy with this and only when I suggested having the UAE instead he agreed to refer me to an interventionist radiologist. I am considering having it done; however I am concerned about the long term effects of the procedure. I have tried to find personal experiences of people who have had UAE, but don't seem to find any. I would appreciate if somebody would help with personal experiences on this site. Mary

Rugby Cv21 4BG  [2015-03-23 00:49:58]

B 's story

Painful procedure

I have had two hysteroscopic myomectomys to remove one fibroid, the first time I also had a biopsy. The biopsy was very painful, I was given gas and air but this made me sick, my blood pressure dropped and I felt like I was going to faint. The second time as the consultant started to remove what was left of the fibroid I twice experienced a sudden, intense stabbing pain that made me flinch and cry out with pain, and I felt very frightened and tearful. Please can someone tell me whether this is a common experience, as descriptions of this procedure don't ever mention how painful it can be. I have read that people can be offered a general anaesthetic. I am a 43 year old, and I am hoping the fibroid will not regrow as the thought of going through this again is terrifying.

Norwich NR5 8TQ  [2015-02-05 13:14:49]

Ez 's story

Open surgery in weeks!!

Hi I have a very large fibroid and a few small ones. In my uterus. I'm going to have an open surgery in a few weeks.has anyone had this done? .can you please tell me your experience.im very nervous. Thank you

Fleet GU14 8JQ  [2015-01-27 18:59:05]

Zowie 's story

Waiting for myomectomy

I was diagnosed with a small fibroid about 10 years ago. Although I have had other gynae problems in that time (endometriosis surgery & fillopian tube removal due to an eptopic) the fibroid has not been of any problem up until 2014. My periods have become a nightmare for me. They can last up until 6-8 weeks at a time and are extremely heavy, I have to double up on sanitary wear and change hourly and yet I still sometimes end up in a mess. Since 2013 I have tried all sorts, the marina coil which I expelled a year later in a large clot, tranexamic acid which had been hit and miss and many more to which none have worked. After 2 hysteroscopies and multiple scans to investigate it appears my fibroid has grown some what in the last 6months. I was offered the choice between an open myomectomy or use. I am 32 & have 2 children so I don't have any intention of having more children but the idea of early menopause is daunting however so is the possibility of a full hysterectomy. However I have decided to opt for the open surgery as I feel this is best for me & my needs. I am on the waiting list and should be having the procedure next month (fingets crossed its going to be successful) I have been seeing Dr Shah from the Barnet Community Gynae Team, he and his tean have been brilliant thus far. Let hope it all goes to plan.

Barnet en5 2uf  [2015-01-18 10:22:26]

SANDIE 's story

Cysts on the ovaries endometriosis and fibroids

I am 49 and have suffered with heavy periods for the last 10 years, 4 years ago I was diagnosed with cysts on the ovaries endometriosis and fibroids. A fibroid the size of a 16 week preganancy this was dicovered when I had a hysteroscopy last February and was causing the heavy bleeding along with pressure on the bladder. I was recommended to have Uterine Embolisation and was sheduled for October last year. However I decided to try some alternative methods myself. In August I started Black Strap Molasses with iron capsules as I had been anaemic, I also started Apple Cider Vinegar 2 teaspoons daily with honey and hot water, along with various vitamins B complex vit D C Spurlina, kelp, Magnesium, Zinc taken on different days of the week. For the past three years I have been vegetarian and having Soya Milk but having read that Soya can make fibroids grow I decided to use coconut oat or almond milk. I have not had a period since August my tummy is not so bloated I swim and walk daily not having periods and being aneamic makes me feel so much better I spoke to my consultants Secretary at the beginning of October and said that things have improved so I cancelled my embolisation appointment. Hoping for a scan around March time to see if Fibroid has shrunk.

Somerset TA3 5LD  [2015-01-08 17:58:59]

A 's story

Embolisation: only after insistence for a referral to a radiologist!

I am just over one year on from having had Fibroid Embolisation. Before having it done I was flooding (one super-plus tampon per hour) constantly, and I mean 24/7 for weeks and weeks at a time. I was expelling huge clots and at one point my bleeding caused my Mirena coil to exit my vagina, past my tampon which had become lost upside down inside me and eventually had to be removed by a doctor! I could never be more than 5 minutes from a toilet, my boyfriend couldn't come anywhere near me because, if we did have sex on the odd occasion that I wasn't bleeding, that caused me to start again! My life was a complete nightmare. All my gynaecologist could suggest was that I have a hysterectomy but, being only 38 at the time and not having had children, I wasn't keen on that idea. Having looked on the internet (and in particular this site) to find out more about fibroids, I asked my gynaecologist about the possibility of Fibroid Embolisation but she thought that my fibroids were too big and numerous for that to be effective in my case (a year before I had the treatment done my womb was the size of a womans who is 18 weeks pregnant and the fibroids were growing all the time - when last measured the largest was 17.6cm x 14.4cm x 14cm and that was 6 months before I had the treatment). I persevered, however, and my gynaecologist finally agreed to seek advice from a Radiologist who performs embolisation procedures at my nearest hospital. He arranged for me to have an MRI scan and, following that confirmed that I was indeed a suitable candidate for the procedure. At the time he said that, because of the size of my fibroids, I may need to have the treatment repeated after 12 months if it wasn't fully effective. In May 2013 I had it done. My pain relief didn't quite work properly during the procedure and as a result I had to spend one extra night in hospital but really I had more-or-less fully recovered within 3 or 4 days. After the operation I continued to bleed continuously (although not heavily) so after trying various combinations of contraceptive pills without any results my doctor finally prescribed me Norethisterone (an amazing drug which stopped my bleeding completely) and fitted another Mirena coil which has stayed in this time! 10 months on from my op I was given a repeat MRI scan to see how successful it had been and it showed that the fibroids have completely shrunk and that I don't need to have the treatment repeated (phew!). I cautiously came off Norethisterone and the bleeding, I'm so pleased to say, has not come back. In fact, due to the coil, I now only have very light spotting for a couple of days a month. All in all I am one very happy bunny and would recommend for any woman with large fibroids to insist that her gynaecologist look into getting her assessed for her suitability for having Fibroid Embolisation. It's definitely been a life changer for me!

Crawley RH11 7ER  [2015-01-02 13:20:43]

V 's story

Mrs

I am 26 I had a myomectomy 18 months ago ,I had 3 very large fibroids .the biggest being 20cm by 17cm ,during the surgery I lost a lot of blood and had 3 blood transfusions .it took me 12 weeks till I felt sort of normal , went to see my surgeon where I was told that my falopian tubes had being damaged and I won\'t be able to have children ,I now have more fibroids growing about 3cm every 12 weeks I have asked if I can have a hysterectomy but they won\'t consider it because of my age .I just wish I could have anything done as the pain and constant bleeding is unbearable !!

Manchester Cw12 1ly  [2014-12-13 20:16:48]

C 's story

ESMYA

If your doctor suggests Esmya as part of your treatment, please do give it a try. I've been on it for 2 weeks. My bleeding stopped almost immediately and I've experienced nothing negative in terms of side effects. Yeah, maybe the muzzy heads and occasional cramps are related but they are not as debilitating as the effects of fibroids. I feel as if I'm finally seeing a solution!

Coventry cv23af  [2014-11-27 23:45:46]

Alison 's story

Embolisation: pain for months due to overlooked dead fibroid expulsion

After six months of being treated for bladder infections I was finally diagnosed with fibroids in July 2007. Evidently the particularly large one which was the size of a 5 month foetus, had been pressing on my bladder and causing the problems thought to be bladder related! I was told about embollisation and it appeared to be the least obtrusive and problematic solution available. I was self-employed so wanted the quickest solution to my ever growing problem. I wasn’t prepared for the side effects of being put into menopause – thought I was going mad! I certainly wasn’t prepared for what happened after that! I went into the hospital feeling relaxed and quite looking forward to two days of enforced bed, TV and magazines. Sadly, it didn’t turn out quite like that. I was merrily chatting away to the nurse as the radiologist began the procedure when all of a sudden the most appalling pain kicked in. On mention of my pain, the radiologist requested morphine for me. As it worsened he said ‘give her more morphine and take her down to recovery’. This was the start of what I can only describe as torture. I writhed in agony in that recovery room and despite being pumped with morphine, the pain got worse and worse. I remember two nurses in that room. A male nurse who was delightful and tried to help me, but there was nothing he could do. And a female nurse who kept barking at me to lie still and then the pain would stop. She asked me what my pain level was on a scale of 1-10 and when I said 10 she informed me that I would not be allowed to leave until my pain was down to a 3. After what seemed like eternity, I told her my pain was a 4, just so I could be let out. In my morphine haze I managed to phone my mum and told her she had to come to the hospital. Afterwards she told me she had never seen anyone in so much pain but there was nothing she could do to help me. It appears that no-one could do anything. I had 4 different types of pain killer; diclofenec, tramadol, co-codamol and paracetamol, along with the morphine, and nothing even touched the pain! I didn’t sleep for 3 days. When I said to the radiologist that I was in so much pain and he didn’t seem to care, his reply was ‘well, I can’t bleed for all my patients’! I was sent for an MRI where a heavy plate was placed over my womb…the part of me that was in agony! I was in tears, beside myself in screaming pain and again, when I mentioned this to the radiologist, his response was ‘oh I didn’t realise they did that’! Seriously?! I was sent home, still in agony. I kept phoning the radiologist’s secretary but was basically told it would all stop soon. It didn’t. I had about a month of terrible pain but was still left feeling like there was a heavy brick sitting in my womb. I had a horrible discharge. Every time I tried to speak to the radiologist I was told it was all very normal and would be fine soon. It wasn’t. It got worse and worse. The discharge was horrendous. The smell was disgusting. I felt so ill. My GP thought I had fibromyalgia as I told her my whole body was aching. Eventually it was suggested I had a laparoscopy to see what was going on. Unfortunately my original gyny was very unwell so I was referred to another. His diagnosis of my condition was ‘there’s nothing wrong with you. Put up with it or have a hysterectomy’. I asked if I might have an infection and he said it was possible but if I took antibiotics it would just return as soon as I stopped taking them. The embollisation took place in January and this all happened in June. In August I asked to see a different gyny. By this time I wanted to see a lady as I was fed up with the treatment I’d had by all these men. The night before I was due to see the female gyny I went to the loo only to discover that something appeared to be falling out of me. I became slightly hysterical and terrified. I thought all my insides were falling out. By the time I arrived at the gyny I just burst into tears and told her that despite the fact that all these men kept telling me there was nothing wrong with me, I was very certain that there was something horribly wrong with me! She took one look at the protrusion and informed me that it was in fact my dead, massively infected, fibroid, trying to get out. She had never seen this before and wasn’t sure what to do but she reassured me that she knew who to speak to and would be in touch with me by the end of the day. She had me booked in for surgery the following day. Both she and the gyny who finally extracted what I now referred to as the ‘dead alien’ told me that I would have been experiencing flu like symptoms for months. I had had this dead, infected thing inside me for nearly 9 months! I felt so so ill I could barely function. I could just about manage work but my social life was pretty dead and I could certainly have no form of intimate relationships! The good news is that I started to feel much better almost immediately. The bad news is that within a year, all sorts of other very strange things started happening to my body. I developed one auto immune condition after another. The most debilitating of which has been massive inflammation in all my tendons in my arms meaning that for nearly three years I could barely move my arms. I couldn’t even carry a handbag. I was also diagnosed with Crohn’s disease which meant I could no longer take anti inflammatories. The pain was so bad that I felt I couldn’t actually go on any longer and started to look at ways out. At this time, fortunately I developed another auto immune condition and was sent for steroid infusions. Despite the fact that these were designed for the new inflammation in my brain, the joyful side effect was that they started to work on my arms as well. I tried all sorts of alternative therapies (all very expensive) and now rely solely on an incredible physio who was the only medical professional who tried piecing together everything that had happened to me in the previous years and actually linking everything together. Unfortunately most medical doctors like to simply treat the one thing you are suffering from rather than looking at the possible reasons why you are in trouble! I firmly believe that all the auto immune conditions I have developed are a result of my body desperately trying to fight the embollisation infection. It didn’t know when to stop and began attacking good cells. I was sent to another radiologist for autologous blood injections for the pain in my arms. Hugely painful again and brought me to the conclusion that radiologists are really scientists who are keen to experiment and try out their latest treatments but in actuality should not be allowed near human beings! The reason for me writing all this down, 6 years after the event, is that I have never found any ‘horror stories’ about embollisation and I feel that women should know that it is not an ‘easy’ solution and that things can go horribly wrong. I still have strange pains in my womb and am again having investigations with a new gyny although they are struggling to find out what’s wrong with me as there is so much scarring in my womb. I did actually write to the hospital to complain about the ‘put up with it’ gyny. I saw a lot of horrified looks on doctors’ faces when I was taken in for the emergency surgery but the medical profession close ranks in these situations so there was no point in taking anything further and at the time I was simply exhausted. I wish I had now! But I can safely say that this ‘simple’ solution to my problem has totally ruined my life. I am a very different person today from the one I was 6 years ago. Ladies, be warned. Embollisation is not always a quick and simple solution to your problems. I sincerely hope that no-one else has to go through what I went through; the unbearable pain and the treatment I received from so called people in the caring profession still haunts me. My life is not bad now but I am still very bitter about the way I was treated and the after effects I still have to live with. Please ensure you are armed with all the facts before you embark on this treatment.

Worcester Park KT4 8FL  [2014-11-25 16:34:09]

Dawn 's story

Waiting for hysterectomy

Well where do I begin? After having children in my early 20\'s and having them c-section I decided at 22 I was to no longer have anymore children and was sterilised with my youngest son. Some may think I was to young to make that decision but for me I knew that having my 2 boys was enough. Since my youngest I had really heavy periods but never really thought anything of it, went to the doctors on numerous times when it got bad but they just said I was normal, I do love how they define normal! In 2011 a good 8 years after my youngest the doctors finally sent me for a scan and found a 3cm fibroid. I had a laparoscopy that year to make sure everything else was ok which it was, they fitted me with the mirena coil and off I went. I had the check up 6 weeks after and then nothing! I still bled but not as much just for longer. Then June this year I started bleeding heavy, the doctors put me on norethisterone, transenamic acid and mefenamic acid and they did nothing to help. They thought the coil had come away and not doing it\'s job. The doctor couldn\'t see due to the amount of blood I was losing, the doctor said she would refer me back to gyno. A week later after losing a little weight I found a large lump in my tummy I could feel over my clothes. I went back to the doctor and he ordered me a scan not only few days after I was taken to hospital in imense pain. After an internal they said they found a large mass so off for a scan I went. It was there they found 2 fibroids but this time one was 9cm and one was 8cm one at the top and the other just under and behind. No wonder I was bleeding, and they found the coil still in place just pushed down. So now 4 months on and some days not being able to get out of bed, some days not knowing you need to urinate but it happens anyway, some days bleeding so much it look likes you\'re dying I am finally in 16 days having a hysterectomy. I honestly can not wait, this has been the most awful experience and my heart goes out to all you fantastic ladies going through this. For me onwards and upwards.

York YO306JJ  [2014-11-25 14:50:10]

J 's story

Mirena and Fibroids!!

I have been having heavy/prolonged periods now for about 15 months. I am 46 with perimenopause symptoms; night sweats, hot flushes etc....JOY!!! I was previously on Cerazette. Then I started taking Northisterone on and off from January 2014 until I had Mirena fitted in September 2014. I am still bleeding!!! Using Northisterone to control this. I had a scan yesterday and they told me I have fibroids. More JOY!!! What do you think my GP will do now?? I have an apt with her tomorrow. I just want to stop bleeding and feeling so tired all the time. Thanks for reading and any input you can give me. WeaselJ

KILMARNOCK KA1 5EB  [2014-11-18 11:57:18]

Cherylle 's story

The Fibriod

I had a embolation done about 12 years ago but was left with a small Fibroid .About 5 years ago I had to go to the gym - clinic were thy scanned and the Fibriod had grown to 13 cm I was put on to injections to reduce the size and after 3 months to have a he's to a hestorectomy but was terrified as the last op I had went terribly wrong.something I would never forget.Anyway I felt well the Fibriod wasn't causing any more problem so I carried on.Then I was diagnosis with Type 2 diabetes were it was found that I had traces of blood in my urine.so my g.p referred me to the the clinic and had test done.All was fine until I had a scan and thy noticed that my Fibriod was leaning on my kidney and said because of this one of the tubes was holding back a tiny bit of urine.now I know what will happen again thy will want to do a removal of my uterus and I'm terrified all over again.

Wigan wn67ab  [2014-11-06 06:08:45]

S 's story

Its a womans problem

How did I feel when I was told that I had a large fibroid? To be honest I was elated it was music to my ears. That's not as crazy as it sounds because when you find an abnormal mass the normal reaction is to fear the worst - even though the doctor said that it was probably a fibroid. For this reason I was determined not to moan about said fibroid which is becoming more of a challenge as time rolls on and on... Following a scan I received letter advising me to visit GP for esmya. After 4 weeks I developed sickening headaches which felt like an inner ear infection. I stopped / started the medication again & the head aches returned - abandoned that one. After several months I phoned to chase up the consultant appointment only to be told that I wasn\'t on the waiting list. I have now been given an appointment for next month & I am hoping to be offered an open myomectomy to remove a large fibroid (likened to 22 week pregnancy) In recent months I have become something of a fibroid anorak and have probably read too much information - I feel very strongly that I neither want or need a hysterectomy. Fibroids are a gendered issue being a 'womans problem'. If men were growing huge tumours on their testicles with resulting incontinence - would this area be so clearly under resourced? Similarly how would men in their 40\'s who have completed their families feel about having their testicles removed to make sure the problem gets sorted once and for all? Its not my intention to dissuade other women from hysterectomy in fact my friend specifically wanted this operation and was given a marina coil instead. I feel strongly that given the sensitive nature of the surgery women should feel in control of their own treatment. The wheels turn very slowly and you have to wait ages for the opportunity to ask these questions. Knowledge is important because it helps patients to be assertive and clear about what they want & why. If refused a myomectomy I will be asking for a copy of my scan report & paying for one - in Latvia because it half the price. I note from my extensive reading that race, weight and lifestyle can increase the risk of fibroids. I am a 41 years old, white have 3 children & train like i\'m in the army & still managed to grow a fibroid the size of a coconut crushing my bladder. So for people plagued by fibroids dont think its something you did or didn't do. I know it could have been worse & I did say I wouldnt moans but it is wearing when a condition goes on and on...

Newcastle under lyme st5 0dy  [2014-10-14 19:56:15]

Gifty.A 's story

Miss

I am 24 years old with no children, I have period pains since I was 13.just recently I have this severe abdominal pain. The abdominal pains stopped but my stomach felt bloated during that period. I felt a my lower left abdomen was very hard when I lay down. so I visited my GP around (June 2014)and he examined me and he also felt something was there, he booked an appointment for an ultrasound at( Newham hospital) I got there and the receptionist told me she sorry but my actual ultrasound scan will be in ( August2014 ) so I called my dad and He said we need to go to A&E. so I went to Frimley Park Hospital in ( July2014 ) and had my ultrasound and MRI scan when I was told I have one large fibroid about 25cm and three small ones. I went through myomectomy in ( 23 September 2014) till recovery from my operation,(7/10/2014)

London rg12 7hl  [2014-10-07 22:16:07]

Jackie 's story

MR guided focused Ultrasound

I am 48 and had 2 fibroids one 9cm and the other 3 cm. my stomach was constantly swollen and I felt constipated. I made a private appointment with the fibroid centre at st Mary\'s in paddington to see a gynaecologist about my condition. I was given an MRI scan to see if I was suitable for MR guided Focussed Ultrasound. I had the treatment last week covered by my health insurance and was told it was successful. The treatment took about 4 hours and at times was uncomfortable as I was lying on my stomach very still. Also my stomach got very hot. However it was better than having a hysterectomy. I am told that the fibroids will shrink but there is the possibility new ones can always grow. I am going to be careful with my diet and try and eat more organic food and also cut out dairy and processed food as these contribute to their growth.

Potters bar En6 1uy  [2014-09-29 17:26:20]

Maria 's story

Hysterectomy or No?

I have been diagnosed with fibroids, and on Tuesday I was told that to remove them I will have hysterectomy,no other procedures were discussed but also this procedure was not discussed with me in detail. I have to admit that I didn't know what the procedure was either, but when I got home I researched the internet I found out exactly what it meant, and before having it done, I would like a second opinion. I have bupa insurance from work but I have no idea who to request to see or which hospital to go to, please could you help me? thank you Maria

London SE20 8ST  [2014-09-18 12:46:58]

Maureen 's story

Ms

3 years ago I started getting really heavy periods and thought this was probably as a result of stress.However, months went on and the bleeding got worse, I couldn't get out of the house when in my periods. After a year I got a range of other problems, my lower back started to really hurt, headaches, tiredness and doing simple house chores became difficult as I was tired all the time. I became aneamic and I was sometimes passing out, iron tablets seemed to do little to help. The prescriptions from my doctor dealt with my pain during the cycle but I was still bleeding heavily. I went sent for a scan and found to have fibroids but my doctor has not yet a referral to a gynaecologist... To relieve my symptoms of anaemia I started taking 2 glasses of beetroot a day,pomegranate fruit, cherries, carrots,amaranth,and other green vegetable. I restored my iron levels and my bleeding is not as severe as it used to be but I still have a lot of pain in my lower back and legs especially towards my period.

London N17 6XU  [2014-08-01 23:08:03]

Donna 's story

Fibroid Embolisation Miracle!

I am just over one year on from having had Fibroid Embolisation. Before having it done I was flooding (one super-plus tampon per hour) constantly, and I mean 24/7 for weeks and weeks at a time. I was expelling huge clots and at one point my bleeding caused my Mirena coil to exit my vagina, past my tampon which had become lost upside down inside me and eventually had to be removed by a doctor! I could never be more than 5 minutes from a toilet, my boyfriend couldn't come anywhere near me because, if we did have sex on the odd occasion that I wasn't bleeding, that caused me to start again! My life was a complete nightmare. All my gynaecologist could suggest was that I have a hysterectomy but, being only 38 at the time and not having had children, I wasn't keen on that idea. Having looked on the internet (and in particular this site) to find out more about fibroids, I asked my gynaecologist about the possibility of Fibroid Embolisation but she thought that my fibroids were too big and numerous for that to be effective in my case (a year before I had the treatment done my womb was the size of a womans who is 18 weeks pregnant and the fibroids were growing all the time - when last measured the largest was 17.6cm x 14.4cm x 14cm and that was 6 months before I had the treatment). I persevered, however, and my gynaecologist finally agreed to seek advice from a Radiologist who performs embolisation procedures at my nearest hospital. He arranged for me to have an MRI scan and, following that confirmed that I was indeed a suitable candidate for the procedure. At the time he said that, because of the size of my fibroids, I may need to have the treatment repeated after 12 months if it wasn't fully effective. In May 2013 I had it done. My pain relief didn't quite work properly during the procedure and as a result I had to spend one extra night in hospital but really I had more-or-less fully recovered within 3 or 4 days. After the operation I continued to bleed continuously (although not heavily) so after trying various combinations of contraceptive pills without any results my doctor finally prescribed me Norethisterone (an amazing drug which stopped my bleeding completely) and fitted another Mirena coil which has stayed in this time! 10 months on from my op I was given a repeat MRI scan to see how successful it had been and it showed that the fibroids have completely shrunk and that I don't need to have the treatment repeated (phew!). I cautiously came off Norethisterone and the bleeding, I'm so pleased to say, has not come back. In fact, due to the coil, I now only have very light spotting for a couple of days a month. All in all I am one very happy bunny and would recommend for any woman with large fibroids to insist that her gynaecologist look into getting her assessed for her suitability for having Fibroid Embolisation. It's definitely been a life changer for me!

Crawley RH11 7ER  [2014-06-15 19:34:05]

Lin 's story

Nothing remains except my sense of humour.

Hi gang. 37 years old. A history or horrendous periods and 9 grapefruit size fibroids which were pushing my womb out through my cervix. How wonderful! Had those removed as well as severe endometriosis blasted with a laser. Wind forward 5 years and I\'m back again. This time the scar tissue from the endometriosis had formed adhesions and stuck my bowel to the inside of my back, and womb. Oh joy. At the Princess Margaret in Windsor I saw Mr Fairbank who suggested a total clearance. We just had to get the hormones correct. Several hours in theatre and a vertical scar (was better then the previous bikini one I had!) I came back minus ovaries, cervix and womb. He\'d popped some testosterone inside to start me on HRT and I had everol patches. He also repaired the hole torn in my bowel. I\'m now 49 and I\'m content. I know I never got to be a Mum, which was the hardest part to deal with, but the hormones are spot on and the scars aren\'t so very bad. My friends who are going through the change naturally are very jealous of me! Hope this helps people!!

Hereford HR29QE  [2014-04-17 08:43:14]

S 's story

36 and undecided

2 years ago I found out that I had fibroids. They said there were multiple fibroids with the largest being 7cm. I've always been undecided about having children for various reasons ie dysfunctional family experiences etc. But this is uncharted waters for me. Yesterday I've found out that they've grown. My doctor had felt my stomach and wanted to get it checked The largest is now 10cm (it certainly explained why my stomach looked slightly bigger than the rest of my body). 2 years ago - after my diagnosis - I re- assessed my relatively okay diet and eventually lost a couple of pounds from my already size 8/10 body. But I didn't think about them too much because I was (and am still single, I have no adverse symptoms (only heavy on the second day of my 5-6 day period)and wasn't sure about my future with children. But now - 2 years later - I don't know if I'll regret my indecisiveness when I'm 40 years old. Therefore I'm re-looking at my diet again (eliminating soya and increasing fruit and vegetables) and increasing the exercise intensity. Plus I'm going to get a full check up after I discuss the results of my scan with the doctor. I want to be referred to a fertility doctor too so they can tell me what I'm up against. Whatever happens I want to be healthy physically and reproductively for myself. This will give me a stronger foundation when I meet someone special I want to have a child with. Whatever happens I'll do my best - the rest is up to God.

London HA9 0AB  [2014-04-05 18:57:04]

Sarah 's story

Sarah Waring

Hi there. A 5cm fibroid was noticed in routine scans when I was pregnant with my son in 2006 (then 39). Sadly, I had a miscarriage in 2008. I was devasted as i knew that at 41 my chances of a much wanted second child were slipping away. Nothing was said about the fibroid being a possible cause but now I wonder. Went on to try to conceive but was unsuccessful and when I reached 44 my husband and I decided to call it a day on trying for a baby. In 2012 after months of suffering from abdominal pains at ovulation, back ache, bloating etc I went to my GP. Initially I wondered if my pain was due to a UTI. Frequent urination was one of the problems. Dr did urine and blood tests. I mentioned fact pain was particularly on left side where I had a fibroid. That idea was totally dismissed by GP. He did pelvic exam and said everything felt normal. When the tests came back negative it was all put down to a possible bug (not UTI) as my white blood cell count was up. After another year of suffering. Pain particularly acute on left side at ovulation, I went back to the GP. Told it was ovulation pain, nothing to do with fibroid as I did not have heavy bleeding. Clearly I looked a bit overweight to him as his prescription was to exercise 3 times a week and diet. Never even did a pelvic exam.That was sept 2013. Despite efforts to diet and exercise my tummy just got bigger (I now look 6 months pregnant!!) so returned to GP this month. She also said ovulation pain the cause but did do an exam. She felt a mass but said could be a full bowel. However, agreed to scan me. Had the scan last week and a massive fibroid was shown. Sonographer said that in her experience such a large one usually resulted in a hysterectomy. Also my left ovary was obscured. I am seeing a gynaecologist next week. Firstly I'm really worried about having a hysterectomy especially my left ovary is removed. I'm 46 and concerned about early menopause as a side effect. I am also alarmed that it took 3 visits and nearly 2 years for a GP to accept my own suspicion my problem could have been a fibroid. I have always had regular periods and not particularly heavy. After all I've read I know that you can have fibroids that are on the outside of the uterus so why don't they know this? If I had been scanned early would the fibroid have been smaller and easier to manage? Desperate for answers, guidance and advice on what to expect in terms of medical support from now on.

Macclesfield SK11 8AP  [2014-03-26 07:49:22]

Luan 's story

My story!!

I am a very fit and active 42year old emergency healthcare worker. 5 months ago i noticed a hard, non-painful mass in my lower abdominal area. I had no period problems...regular mensus...no haemorrhaging and no other symptoms. I was diagnosed 8 years ago with PCOS ( i have no kids and no plans!) Anyway i didnt go and see my GP but just monitored it lol! In the last 6 weeks however i started to notice the mass appeared larger (but no obvious abdo swelling)...but it was the increased need to urinate...abdominal fullness and backache that prompted me to attend my GP. My GP agreed that there was a significant uterine mass from my left ovary to the right side and it was apparent from my belly button down to my pelvic area..this was palpable externally and i have had no internal exams done. Bloods including CA125 were taken as well as pregnancy test and urine samples ...these all came back normal. I had an ultrasound of my pelvic region, abdomen and kidneys done on wednesday. The GP who carried out the ultrasound didnt say much apart from that i had obvious cysts on my ovaries and a large fibroid on my left ovary She advised me to see my own GP to discuss her findings and options but tried to dissuade me from any surgical interventions for ?pain issues? and thought perhaps other options such as medication might be more appropriate but the side-effects of hormone therapy might not suit me either (visual disturbances/sleepiness/inability to drive...) i drive at work therefore i cannot take meds that affect my ability to drive! I do not want a hysterectomy if possible mainly due to the length of time in which i would need off to recover from work as i have a very physical job with daily heavy lifting. Since having the scan 2 days ago i have had actual sharp, abdominal pain which is mainly in my left ovarian area and radiates into my left flank...i also felt nauseus and it was uncomfortable to drive. I even had to resort to taking pain-relief (ibuprofen) and i never need to take anything! i wondered if perhaps i might just be ovulating or that the fibroids are growing. I have an appointment on monday to see my GP and discuss referral etc to see a gynaecologist but i am tempted to seek a private opinion re my options. I have also read that losing weight and cutting out meat/caffeine etc can reduce the size of the fibroids...since losing weight over the last 3 years..becoming a vegetarian/gluten free...never consumed caffeine/alcohol/non smoker/exercise 3-4hrs daily..well within a normal BMI...my symptoms have become worse not better...how can this be? i would be interested to hear from anyone in a similar position as i dont know what else to do to make my life healthier lol!!

Aberdeen ab534ub  [2014-03-21 15:04:58]

Nicole 's story

How Dr Adams helped me solve all my problems in 48hours

I want to share my testimony and also thank prophet Adams for what he has done for me, Am so happy today and i have stopped thinking. After my husband Rick left me for another woman because I can't give him a baby and that he hates me, i cried because i really loved Rick with all my heart. Then i decided to come online and look for a spell caster to help me bring back Rick, Until God directed prophet Adams to me. When i met prophet Adams i was thinking his not real, But he told me to give him a chance that what will he gain if he adds more pain to my pain,That all he want his my happiness. So i decided to give him a chance, and he told me that Rick will be back to my arms within 48hours and I will be pregnant and have a baby,i said okay truly when prophet Adams casted this spell my lover Rick called me and said he wanted to tell me something i was shocked, He told me that i should forgive him, That he loves me with all his heart and promise never to leave me till the rest of his life. Prophet Adams also told me that ones Rick comes back to me he is going to buy me a gift. Rick Bought me a Brand New Car, And i also had access to his account to prove to me that he will never leave me and now am pregnant. You can contact prophet Adams for any kind of help and he will never disappoint you. His email - dradamsjohnsoncentre12@gmail. com

New york 10001  [2014-03-08 08:11:39]

J 's story

Open Myomectomy, some hints for those awaiting surgery

I am 40 years old, no children. I was first told I had a fibroid 10 years ago whilst having a mirena coil fitted. The fibroid seemed to shrink within a year of the mirena, and didn\'t cause any problems. When my coil was changed after 5 years, ithe fibroid was present but seemed smaller than it had been. 18 months ago I started having heavy and irregular periods. I saw a gynae, who said that my mirena was coming to the end of its 5 year use, and was probably not giving a constant supply of hormones. She performed a hysteroscopy, D&C, and replaced the mirena. She said I had a tilted womb, and that the previous mirena had been in totally the wrong position. She said I had one 10 cm fibroid. Unfortunately, over the next 6months my bleeding got worse, not better. After constant bleeding for 5 weeks, I phoned the gynae. She was not able to see me (as I am being treated through private medical insurance and she had stopped taking private patients). She told me I would have to consider hysterectomy, and prescribed norethisterone to stop the bleeding. I saw another gynae, had an MRI scan which showed one 11cm fibroid, and several smaller ones. The gynae told me I should have an open myomectomy, which was done 3 weeks later. I\'m now 17 days post-op. and recovering well. I do have a hematoma which is probably going to be drained next week. There are a few things which I think would be helpful to know, especially as so much of the info on the internet is American and therefore not totally relevant. So here\'s my advice for anyone awaiting their myomectomy: 1. Buy at least two pairs of very loose trousers. I found that \"yoga pants\" are ideal, the sort with no elastic in the waistband, they just have a fold over waistband and are made of lightweight stretchy fabric. I have been so swollen around my tummy that I still can\'t wear any of my normal trousers. 2. Buy some maternity knickers, the type that go all the way over your \"bump\". Normal knickers just roll or slide down and end up right on top of your incision line. 3. When they get you out of bed for the first time (for me it was the day after surgery, to go to the loo for the first time after having my catheter out), you may feel faint. IF when the nurse gets you sitting on the edge of the bed, ready to stand, you feel faint (eg queasy, your ears start ringing) THEN DON\'T BE AN IDIOT LIKE ME, just lie back down and tell them. I tried to fight it, and went from sitting on the edge of the bed to fainting and having to be caught whilst falling to the floor. Turns out my haemoglobin was low, due to blood loss underestimated in surgery/or due to internal bleeding (hematoma as later found). 2 units of blood transfusion later, I was fine. 4. That first wee might be tricky even when you eventually get to the loo! Turn the tap on, have some water in a bottle with a sports cap and trickle it past the relevant area to try to give your body the idea. What eventually worked for me was my mobile phone ringing- just gave me the feeling of urgency required I guess! 5. Remember that you won\'t have a fancy hospital bed at home, so on your last night in hospital, lay the bed totally flat and make sure you can sleep like that. I found I could lay on my side by then. 6. They sent me home with diclofenac (anti- inflammatory) and 30/500 (very strong) co-codomol painkillers. You should take the diclofenac regularly, but I found I was able to manage my pain without resorting to using the full dose of co-codomol. I did take it at night, but only one tablet, not two, and only for the first two nights at home. Sleep is important for healing, so take what you need to make you comfortable, but there\'s no need to overdo those strong pills. They constipate you, and that just makes matters worse. I used normal paracetamol during the day. 7. Get walking. Follow the advice you\'re given, which for me was walk the hospital corridors once I\'d had my blood transfusion and was steady on my feet; then once home start with 5 mins walk and build up. I do a lot of walking usually (dog owner!) so I was up to 2 miles within 9 days of surgery. It will help your lungs to recover from anaesthetic and morphine, and will help get your digestive system working properly again. 8. If your tummy swelling seems to be getting hard, ask your doctor about it. It could be a hematoma, which may need draining.

Llanon SY23 5HG  [2014-03-07 19:05:25]

Rosey 's story

Laparoscopic removal of large fibroids

I began to notice a lump in my abdomen last year. I got married in June and decided not to worry about it as I was fairly sure it wasn't serious. After I got married I went to the GP who sent me for an ultrasound confirming fibroids. I didn't have any other symptoms really, quite painful periods, but regular and not out of the ordinary(I didn't think anyway!) My surgeon has been excellent at explaining things and seems to have done a great job. I had 3 injections of Prostap between November and January which worked well in shrinking the fibroids. I didn't have any significant side effects and still had periods, though they were lighter. Even after that, I had two fibroids removed, one 15x17 cms and one 6x8. I lost about 5lbs in weight just with the surgery!! The fibroids were removed laparoscopically and it turned out that neither went right into the uterine cavity. There are still two small ones left- the surgeon said he thought removing them might do more harm than good as there was also some endometriosis there and the combination could cause adhesions. One week later, the surgeon reviewed me and said we could start trying as soon as I felt well enough. He knows I am concerned about my age. We're two weeks into starting to have sex again. I still haven't had a period again, so who knows, maybe I could be pregnant already! We'll see...

Birmingham B30 3LD  [2014-03-06 20:42:33]

Eva 's story

A few tips i have tried

I have 5 "small" fibroids all under 3cm x 2cm in size however like many women i suffered for years from pain, incontinence, large stools,constipation, heavy bleeding and clots, nausea, bloating, low iron stores, extreme fatigue and depression etc. Also be aware that fibroids can press against a large vein we have running near the womb and result in leg aches and varices in the legs. i have had full hormones blood tests which showed too much oestrogens and low testosterone. i\'d advise you to ask for those tests as very often fibroids are a condition associated with hormonal disorder in the first place. the blood test must be done on day 23 of the cycle if your cycle is 28 days long for the results to be of use. some foods increase the disorder, such as yam and soya. They increase oestrogen in the body. Oestrogen is counterbalanced by progesteron, many problems are due to the fact that not enough progesterone is secreted by our ovaries during the 2nd half of our menstrual cycle. To counteract the heavy bleeding during periods as well as excruciating period pains and clots i have found 2 remedies: _ACUPUNCTURE was done by a chinese trained doctor and very successful, only one session and it was sorted.The period following the session was one of the worst i'd had in a long time, similar to the agony i used to endure as a teenager but afterwards everything normal, no heavy flow, no clots no dark blood no pain. This lasted for 18 months. then little by little the problem returned. -HERBAL TINCTURE in drops of full extract tincture in alcohol of a plant calle LADY\'S MANTLE latin name ALCHEMILLA VULGARIS. I took only a few drops (10) every morning first thing in the morning. It was like magic.I didn\'t even notice my periods had started and the flow was normal on the light side blood bright red. i am not claiming these therapies will get rid of the fibroids, but they really are an immense help about the bleeding. Doctors often give women iron tablets however not all iron is absorbable by the body, i found that iron gluconate in liquid form is ok when taken alongside the vitamins which help the body use iron , these are: Folic acid, vitamin B9- vitamins B12, C, D, and the zinc mineral. They work together and iron on its own without them is useless. Some people also recommend vit B6 taken under the tongue but this i have not tried. From food, iron and vitamin B12 can only be reasonably absorbed from red meat and offal.Many gps show themselves to be pig ignorant (like mine) when advising to eat spinach for iron (they watched popeye as a child) yes there is some iron in spinach but it is not well absorbed by our body and you would need to eat tons of it before seeing any effect... Also doctors will deny that persistent bleeding is damaging to health well very quickly bleeding leads to extreme fatigue even without officially detected anemia, and to and depression, sometimes severe depression. We are all different, some women require more than the minimum or \"normal\" amount of iron and B vitamins to feel well, listen to your body. My mood lifted after 3 weeks of folic acid and iron and vit C supplementation! Gp had recommended prozac.... finally (for now) i would urge anybody considering hysterectomy to really research this operation on the net as it has a lot of horrific side effects for some. i have met a woman who had the embolisation procedure and immediately had troubled vision and headaches after the operation. she was told had nothing to do with op, but is convinced otherwise. There is a link from the blood vessels of the womb to blood flow in the rest of the body, and my theory is that the blood vessels in the eyes are sensitive to changes in blood flow. good luck to all

London sw2 4qb  [2014-03-02 22:13:01]

Remy 's story

Agony post TCRF operation.

I was diagnosed with a 7cm submucosal fibroid and was booked for a hysteroscopic resection. I had a spinal as opposed to a general anaesthetic due to risk factors and all went well as far as I know. After returning to my hospital bed I fell asleep. I was woken up by really bad abdominal pains which very quickly escalated to agony. Now I have broken bones in my life, had third degree burns and skin grafts and numerous accidents,operations etc but I have never in my life experienced agonising pain on this scale. I truly thought something had gone wrong and I might die.I am the type of person if I hurt myself pretty badly I will go quiet and try to completely distract till the worst is over. Over the course of an hour or so I was was given co-codamol, what I think we\'re Diclofenac and oral morphine before finally being given a morphine injection which was the first thing that even touched the pain. The consultant came and explained that as the fibroid was so big my body was effectively going through a false labour. My uterus or/and womb was contracting back to its normal size. I have been left very traumatised by this episode as I was screaming in agony and it seems the nurses see many patients coming from the same procedure who don\'t seem in as much pain as I was and maybe thought I was over exaggerating or something but I was begging them to please help me,and it was only when they spoke to the consultant that they sprung into action and gave me the injection. I can\'t seem to find anything like what happened to me on any sites. I suppose amongst other things I\'m still confused and am wondering if anyone has experienced similar or ever heard of this happening. My main concern is the nurses were just being so uninformed and unsympathetic (I was even told to stop screaming) yet after speaking to the consultant they were all very sympathetic and telling me how awful it must have been. I had to beg and beg for every pain relief. I wouldn\'t like for it to happen to anyone else.

Manchester M15 5EP  [2014-03-01 05:14:39]

D 's story

Waiting and Hoping

I am 28 year's old and I have a beautiful 5 year old girl. I have always dreamed of a large family so when I struggled to conceive for 5 years after my daughter was born I decided to seek help for my infertility. Upon waiting to be seen I noticed a large lump growing just above my pubic bone which was painful to touch as was the surrounding area so of course I panicked and went to see my Doctor, He referred me for an ultrasound. I was informed I has a large fibroid measuring 15.5cm. My Doctor wrote an urgent referral to the hospital as my symptoms have worsened and there is days I can't leave the house with the pain or play with my daughter, I can't even do simple housework, the hospital then informed that the Doctor at the hospital deemed my symptoms as not urgent and I can wait up to 12 weeks just to have a consultation with a gynaecologist. Since that information has been passed to me my own Doctor has felt the lump grow and is desparately trying to get me seen sooner. So here I am waiting and hoping to be seen and treated soon.

Edinburgh EH11 1AX  [2014-02-20 22:33:58]

Jean 's story

Fibroid and sub total hysterectomy

On 23rd Jan i had my operation, i was really scared as I did not know what to expect. I have to say the pain after the operation wasn't half as bad as i thought it would be, i was up walking the following day and went home on day 3. The clips were removed on day 10 and didn't hurt at all. Although I feel well I am not doing any jobs around the house but I am going for daily walks and to meet with friends to get me out of the house. I feel wonderful and have lost a very large fibroid resulting in me losing 8lb 13 oz - bonus :-) Please don't be afraid.

Preston PR2 3BP  [2014-02-05 11:39:33]

Kate 's story

Fibroids/ Miscarriage

Im 33 years old and had been trying for 4 years to conceive when i finally found out i was pregnant when i was 32. When i went for an early preg scan at 6 weeks preg they noticed 2 fibroids but at that point wernt to worried. At my 14 week scans the fibroids were both 9cm and i had a third at 5cm, at my 20 week scan they were 12cm and the smallest 8cm. They then decided to re scan in a week. Sadly i miscarried at 21 weeks preg.At my follow up appoint 2 months later they said that they felt the fibroids had caused the miscarriage and im now booked in to have them removed unfortunately i have to have tthem out via a laprotomy due to there position. Im very nervous as im desperate to be a mother and times ticking.

Honiton EX14 1AG  [2014-02-03 16:01:47]

C 's story

C

I was initially diagnosed with fibroids just over a year ago, because I was suffering with very heavy periods, which made it difficult to function. I was referred to my hospital for a vaginal scan and was advised to go on the pill by my GP to help my heavy periods, which they do. However, September last year I could feel lumps in my abdomen so promptly went back to my GP who then referred me back to the hospital. Straightaway, upon seeing the Consultant, and after examining me, I was pushed to have a hysterectomy (I'm nearly 44 years old). I pushed for UAE so had a MRI scan for that, but then the results showed two fibroids with narrow stalks, so then told I was unsuitable for the UAE. Since been back to hospital & really pushed to yet again have a hysterectomy, to which I said no again. I now have been prescribed Esmya tablets to be taken for 3 months & then referred back to the hospital in 6 months time. I was told something worrying however at hospital on the recent visit, that after the age of 45 you are given a complete hysterectomy, (removal of ovaries) because of the risk of ovarian cancer past the age of 45. A family member had a complete hysterectomy and straightaway was thrown into the menopause without any respite. Does anyone else have any experience of being told this about hysterectomies? Thanks!

Derby DE72 3NU  [2014-01-28 20:38:52]

Claire 's story

My ongoing battle against fibroids

Hi I have suffered from heavey periods since 2010.During a routine health check including a blood test it was discovered that my iron count was 7.5.not good! Started on iron pills straight away and sent for a ultra sound to see if I had fibroids. 3 small ones where found, Dr said not big enough to operate on so I was left to get on with it.2011 still taking iron and now on tranecamic acid to try and control the bleeding, it does help but still heavey, don't like to go to far from home during period work a nightmare.Had a chat with GP who wants me to have a coil fitted as iron count is still a problem. Went to see a female GP who at last referred me to a specialist. To cut along story short I have just had my 3rd laproscopic fibroid resection 12.11.13, on the same fibroid which just seems to want to keep growing;as we are still trying to concieve after 18 years of trying don\'t want to give up. My surgeon now wants to check for ovulation and my husdands sperm count as she feels my only option left will be a hysterectomy, if this doesn\'t work. Have now not had alcohol for 6 months and have been taking agnus castus and milk thistle for the last 5 months to try and balnce my hormones. I am hoping that this time all goes to plan and I get my life back heavey periods are a nightmare.

Cinderford gl14 2qu  [2013-11-16 17:26:38]

Claire 's story

Never even knew....

I had always been regular and what I considered to luckily be light during my periods. I'd been on the pill since I was 16 and the same pill with no problems from 17. April 2012 that all changed. We believed I suffered a miscarriage from a recently ended relationship however nobody seemed to be able to confirm it. I could sit completely still and literally feel the blood and clots pouring out of me. I went for a scan, nothing showed. Blood tests, nothing showed. I was back and forth to my doctors but nobody had any answers. I went for another scan (internal and external) and nothing showed. Finally I was referred to hospital where an ablation and (due to the size and frequency of the clots I was passing) sterilisation were authorised. I got taken into theatre only to come round to find that as they were about to operate, they had discovered a 3-4cm fibroid growing through the wall of my womb. How had this been missed?! They couldn't operate as they didn't have permission so booked me in for another date. It's been 6 weeks since the operation, scars have healed and although I get the odd twinge here and there, I'm back and enjoying my life again where before I had been completely debilitated mentally, physically and monetarily. To think that such a small thing can cause so much damage is insane! But I'm glad that finally, after 22 months of constant bleeding, pain and putting my 30 year life on hold, I can now live again.

Stanford-le-Hope SS17 0DB  [2013-11-13 16:54:31]

J 's story

Myomectomy or UAE/UFE?

I'm 42. I'm married, one rescue puppy, no children. Thinking about child/ren. I was diagnosed with fibroids recently - two about 5cm each, but giving me the uterus of a 5 month pregnancy. When it came to my periods they were so heavy it was easier just to sit on the toilet sometimes. I got very bad sudden pain, breathlessness, went cold, dizzy and fought not to pass out...this happened four periods in a row (most recent ones). Before that I thought I was just getting older and my periods were getting very heavy. I went to the Doctors the second time it happened, she took my blood pressure, laughed (really, this damned Doctor just kept laughing like I was a hypochondriac!!!) because it was so low and said because it was warm weather, mixed with my low pressure I was feeling faint and that I would have to be haemorrhaging blood for that to be the cause(which of course it was), told me to drink plenty of water and sent me on my way saying that there was nothing wrong with me, even though I'd also told her I was diagnosed with anemia the month before. So the following month I had to call my husband home from work because I was so scared I thought I was dying...and I wasn't too far wrong...but yet again, no one would take my symptoms seriously...I lost about two pints of blood in under an hour. My husband called the Doctors for an appointment, which we got, then he called again saying things were getting much worse and that the Doctor should come here - they said no. They got even worse and my husband called them saying he thinks he needs to call an ambulance - they told him that really wouldn't be necessary and to come to the Doctors surgery and they'd make sure that I didn't have to wait long. Eventually my husband drove me 30 seconds to the Doctors where I was white as a sheet and feeling very faint and cold. I went into the Doctors and longer story short - they called an ambulance almost immediately having taken my blood pressure - which was almost non-existent. That's the problem - Doctors think everyone exaggerates - I don't. The ambulance service people actually asked us why we didn't call them in the first place! So that's my grumble about not being taken seriously. Since then, I have been taken very seriously. I now have two options - Abdominal Myomectomy or UAE / UFE (uterine artery embolisation or uterine fibroid embolisation - same thing). I have no clue which to go for and no matter how much I read about either procedure, there appears to be no good answer. Both have their pros and cons - equally good and bad as far as I can see. I am getting down to the "tossing a coin" stage with this. Worst part is that I have questions about my own case - like what type of fibroids are they, where are they located, the full measurements, can I have an MRI scan to see if , a. I am suitable for UAE, b. if there are any other underlying issues/causes that the ultrasound/physical exam would not pick up which would also make UAE procedure not possible? What happens to outer-uterus fibroid tissues when they are killed (as they can't be expelled)? What are the latest facts and figures for myomectomy vs. UAE? Is it possible to shrink mine first and only have keyhole surgery? Can I know the success/failure rate and experience of my surgeon/radiologist? Where would either procedure take place? How long would I have to wait for either procedure? The problem is that I only thought of these questions after my appointment with the Gyno consultant...she seemed to think that I should be able to make a decision on the spot. When I couldn't, I had to make another appointment to see her - but the earliest was five weeks away...another five weeks waiting...that appointment is this Friday. Inbetween I have controlled my period with Noresthisterone. I also emailed the consultant's secretary with my questions because I wanted to be better prepared for the appointment having already got the answers I needed, but the answer was basically "we'll discuss it at your next appointment". I just find the whole thing really frustrating. As said, no idea what I'm going to do - neither are appealing. Anyway, feels good to get that off my chest. I'll follow-up with what I decide and why, then eventually, the outcome. Good luck to you all...I know this doesn't really provide answers (more symptoms)...but you can learn two things from this: 1. Don't be fobbed off when you know something's wrong, 2. Read and research and take all your questions with you! :)

Dorking RH43JB  [2013-11-04 19:05:35]

G 's story

Open Abdominal Myomectomy Surgery

I have always had very painful periods since I began age 11. After many years of dismissing them and taking painkillers I was finally referred to a gynaecologist. They found three small fibroids in April 2010. I had a diagnostic endoscopy in October 2010 whereby all was normal and I didn\'t have any endometriosis. I was told to wait it out and see how it went. I asked why the fibroids weren\'t removed as one of them was 3x3 3 cm. I was told that I would need a separate GP referral for that. During this time I should have been offered the coil as this may have prevented them from growing further but wasn\'t. I think once you have such a condition follow up appointments should be made to monitor the fibroids rather than leaving women to carry on not knowing unless they get severe symptoms. I was always feeling tired and slow. I used to go to the toilet many times during the night and always felt so awful. So I went back to the GP and got a referral for a scan in January 2013. My fibroids had doubled in size and the pressure from the largest one on my bladder especially when lying down made me want to pass urine. I am of Indian descent and 39 years old. I am now single and do not have children but would like to have children. I then had an appointment with the gyne department again and the second /third appointment resulted in me asking for a myomectomy as my symptoms were effecting my life. I had to really fight for the surgery as the Drs would rather you didn\'t as it is a major operation and it is the NHS. I think all women in a similar situation should do their research and decide loosely on what they need to do. Then find a hospital/consultant they would prefer to be referred to via their GP. I didn\'t do that and in hindsight I should have done. I was referred to my local hospital where the waiting lists are long and they are a disorganised hospital I had my surgery date changed twice and the third date was the one that I ended up following. I haven\'t included the name of the hospital as this post is for other women as guidance and not a complaint. I had my surgery four weeks ago this Monday. The actual surgery went ahead fine, two hours to remove two fibroids as the third had merged with one of the others. Make sure before going to hospital your house is clean and you have milk and bread and fruit available and that you have cleaned your bed sheets and have loose clothes available to hand. I stayed in hospital for three nights and discharged on the Thursday morning. While in hospital bring ear plugs as it very noisy in a shared ward. Ask friends and family to bring in magazines and fresh fruit to eat. When possible walk around. My catheter was removed on the second day. Make sure a nurse has looked at and re dressed your incisions if necessary and if you haven\'t passed a stool that you get a laxative so you can either do it in hospital or when you go home. You have to ask in a NHS hospital other wise nobody will bother, don\'t feel as if you shouldn\'t bother the staff as I did. We are all responsible for our healing so it is best that you ask a nurse or the Dr when you need to and not hesitate especially about pain, incision management, stools and urine passing. If you need help do ask for it because if you injure yourself it will be you who will have to deal with that also. I live by myself and was terrified I would not be able to cope and be a burden. I never had so much time off sick and you shouldn\'t feel bad about that. Use the time to heal inside and out to establish yourself again and bring about better patterns of living, eating, sleeping and exercising. Make sure you get a wheel chair to take you to your ride home as I didn\'t and was very unsteady on my feet. I had to go back to the hospital to see a GP due to not passing a stool on the Saturday the week of the surgery. I was prescribed a laxative and was in so much pain and discomfort. This could have been avoided has I spoken about not passing a stool when in hospital. In the end I passed a stool on the Sunday after treatment. I carried on living by myself and my mother used to come over and bring in lunch and dinner but some days I managed by myself. Many people are ignorant and do not understand the surgery or the condition. I have been told that I am lazy and fat and I should be doing more by family members and had friends over and have to cook and wash up because they do not understand that you will get tired after the surgery and it is important you control what you eat as you are more likely to put on weight due to being inactive. So even though it is great to have people over it might not be a good idea if you do so when by yourself as you will end up having to clear up when they leave or cook. They may also bring in sweets and other fattening food and you really don\'t need to be eating that. Time passes quickly and it is best to not get stressed about anything such as a break up or work. I have started using bio oil and had my stiches removed by the nurse at my GP surgery. Make sure the catheter stiches are also removed. I think it is important to see the nurse at your GP practise at least once to show your incision and get advice on it. I saw the GP too as I got a urinary tract infection. Having so much time off does make one think about their life. As a single woman with no husband or boyfriend I have had to reassess my self and my goals. It can be a very lonely time and I have to pick myself up and get on with it. Thank you for reading about my fibroid journey. I wish you well with your journey.

Hounslow, Middlesex TW5 0DU  [2013-10-20 16:05:27]

Hilary 's story

Waiting for hysterectomy

I am 58 years' old and have been suffering from fibroids for about four years. They seemed to just appear overnight as one morning I found I could not fasten my trousers. An MRI showed three enormous fibroids plus others hidden giving me a 32 week pregnant uterus. I was 54 and had not had my menopause so, after seeing a consultant, decided to let nature take its course. Unfortunately my menopause never happened and I started flooding. I had a hysteroscopy and my consultant said everything seemed to be OK and discharged me. I then started flooding again and ended up in A&E twice. I then changed consultants who started me on Zoladex. The bleeding stopped for six months but the side effects of the injections were pretty awful. About a month after I finished the injections my bleeding started again so had another hysteroscopy which was not very successful as one one my fibroids had pushed into my cervix so they were unable to do or see very much. My bleeding then stopped for four months so I believed I was finally menopausal but the bleeding has now returned worse than ever and I spent another night in hospital last week after being rushed into A&E and where I almost collapsed. I saw my consultant and am now waiting for an abdominal hysterectomy. I had seen a radiologist previously about a UFE but we both agreed it was not an option. I have been put on Norethisterone but am still bleeding. Hindsight is a wonderful thing and if I had known four years' ago what I was going to go through I would have made different choices. I am now almost housebound as I am worried about flooding if I go out. I am very scared at the prospect of a hysterectomy especially as I live alone and don't have family or friends close by. Anyone been through similar?

London N14 6HE  [2013-10-10 12:52:32]

Marie 's story

Hysterectomy or not?

At the age of 33 I starting to try to get pregnant. After years of waiting discovered I had fibroids. Trying to save my womb opted for a myomectomy. Realising then I couldn\'t have free Ivf. Fibroids returned I fell pregnant & lost it, days before our Adoption became final!! So I have pain and abdominal bloating and would like to adopt again if possible. But at 43 being offered a mini hysterectomy I\'m torn.. I could conceive, I could miss out. I could have complications with hysterectomy, my husband also feels discomfort during intercourse so it would be great to get our lives back.. What is best.. On suggestion of hysterectomy my first reaction was relief.. But don\'t want to be hasty.

Derby De23 1af  [2013-10-06 09:08:05]

O 's story

Eliatha

Hi, I lost 2 stone in weight for other reasons and suddenly felt a large mass in my stomach and had blood test done for Ovarian cancer which was normal and then I had ultrasound done and was told I had 8cm fibroid. I am now going to see the Gynae but I am scared as I am only 41 and dont have kids but would like them but Im worried that they made a mistake when they did the ultrasound it is something malignant. I have put the weight back on and it feels the same to me now and will go but I am ever so worried, dont want to have hysterectomy or go through some kind of forced menapause. I dont have any changes to my period just the lump in tummy when lying down and a little backache and bowel but otherwise seems ok. Help, am worried! Thank you.

LONDON N10 1BD  [2013-09-25 17:50:46]

Catherine 's story

So glad I found this site, am not alone anymore

Always suffered with painful and heavy periods, but flooding controllable and never lasted beyond 7 days with worst part being 2 days in for a couple of days. Then suddenly in 2010 I flooded big time with no warning, was literally sat on toilet for 2 hours unable to move, each time I attempted to stand I would flood, so much so the tampon (super plus) was flushed out of me. I passed clots the size of portions of liver. I was on my own and terrified. Eventually it stopped and I managed to get to work and carry on as normal. The next day things were normal then on the third day half an hour before finishing work I stood up and coughed and flooded. Dashed to the toilets at work and was back and forth every 10 mins, cried all the way home, when I eventually got out of the bathroom I called the Dr. She prescribed norethisterone and made appt for Monday. Over weekend I flooded on and off, pills not really working. Dr was lovely and said I need to go for scan, was unlikely to be cancer but had to rule it out. She took bloods for testing. Next day I am out of house and come home to note from Drs through my door, and three messages on ansaphone. As it was late I didn’t ring but spent all night awake terrified and worrying that it was cancer and I was going to die. Called Dr first thing, she said I had to come back for more blood tests as my HB level was 3.8 and she wanted to check there was no mistake. I went back for test, got call at 4pm telling me to get to Dr and then hospital as no mistake, HB level had dropped further to 3.6 and if I could not get a lift then she would send ambulance. I was in shock, had elderly ill horse to find someone to care for, had to ring round to find lift to hospital, ring work to explain upcoming absence, find someone to care for horse as Dr would not let me opt out of going to hospital. Got to hospital and was admitted and had three transfusions, internal exams and scans, conflicting advice from Drs, and an exploratory operation under GA to take sample of fibroid to test for cancer. Eventually came back clear and was told to wean off norethisterone, but as soon as I did, the flooding came back. Managed to get down to 1 tab each day but still suffered intermittent bleeds, although very small, but no pain and never knew when it would happen. Consquently I became a virtual recluse, I would not agree to any commitments as I never knew what state I would be in as it could be fine for weeks then suddenly come on out of the blue. I managed like this for about a year, then just after Xmas 2012 I started with early morning bleeds, this went on for a few months then I flooded big time and had to leave work. Went to Dr who was incredibly unsympathetic and rude, told me I would have to have a hysterectomy. Got referred to Gynae who sent me for more scans, during which I have been told my womb looks like that of a woman who has had at least three children - I have had none. Gynae also said that hysterectomy was not necessary and she could resect the fibroid and insert mirena (fibroid sitting where mirena needs to be). They all seem to think the mirena will be the answer to all my problems, I am not convinced. I now have the implant and am continuing to take norethisterone twice daily. On Saturday I had painful cramps and light bleeding, I had cramps and a bleed again this morning. I am terrified this is going to all kick off again, I feel so alone, no-one I know has been through this, the Drs are pushing for operation (they reckon it is day surgery) and mirena, I am resisting because I have no-one at home to look after me if anything goes wrong, I cannot afford to be off work and I have animals that require my care. The worst part of this (aside from flooding) is the isolation, no-one around who understands, they are sympathetic but unless you have experience this you cannot possibly know how degrading, demoralising, depressing it is. The Drs who give conflicting information, and throw away comments like “you will have to have hysterectomy” without thought as to how that news will be received. The feeling that you are some sort of freak and that your body has let you down, trying desperately to carry on as normal at work, as this is not considered an “illness” as such. I am so glad I found this site, and know that I am not alone, however I am sorry to hear so many of us are suffering and so much poor and conflicting information from Drs out there. Sorry if this is rushed and garbled - having to do this at work in lunch break.

Crawley RH11 9QS  [2013-09-17 12:14:35]

Arienne 's story

My ongoing battle with fibroids

Hi all. It\'s been somewhat comforting reading all your stories, so I thought I would share mine so that others can know they are not alone. I notice many of the women who suffer from these horrible growths seem to be older than me. I am 29. In 2006 I gave birth to my beautiful son. 4 weeks after having him I was taken into hospital due to heavy bleeding. I was told it was nothing to worry about and go away and take painkillers. It was from this point onwards my menstrual life changed. I had always suffered from painful, irregular periods in the past. Usually lasting 7 days but there was never any flooding.Now my periods can last anything from 10 days to 6 weeks at a time. The pain at times can be similar to that I remembered when I first went into labour. Then there\'s the flooding and clots. I can stand up and feel it pour out of me, filling my pad and going down my leg. Messing my clothes and bedding. In 2012 I had an ultrasound and was diagnosed with several fibroids. This until recently was all the information I was given. I was told its just one of those things and I needed a coil. Blood tests always return with me having no iron stores. So I live off ferrous sulphate iron tablets. I have been back and forth to the doctors goodness knows how many times to try to get some answers as my quality of life is seriously affected by this condition. \'You need a coil fitted is all I ever got back\'. I wasnt happy to have one as i\'d rather know what is wrong with me than just shoving another foreign object into the equation. I have been prescribed tranexamic acid in the past which didn\'t help at all. I have spent most of my twenties at the mercy of these fibroids, in pain and constantly tired. Anyway two weeks ago I was admitted into hospital after bleeding for a month and the pain and flooding escalated to a point where I became really worried that perhaps this was more than \'just one of those things\' As it was a weekend I wasn\'t able to see a specialist as such but the nurse there was amazing. She told me that she couldn\'t believe my doctor has never referred me to a gynecologist and that this really needs investigating further. She sent a report to my doctor advising a referral. Now I have asked many a time to see someone so that I could get some answers but I was told all they would do is offer me a hysterectomy! I am 29! I dont want that as I would love another child. The time for this has never been right, mainly as I spend most of my life bleeding. Not the most seductive thing. My fiancé of 11 years though has always been supportive and understanding though. The hospital prescribed me Northesterone for 10 days and told me to see my GP. I returned to my GP 4 days later as I had a routine smear test booked in. This she was unable to do as I was still bleeding! I asked her about being referred and once I again I hear the words \'you need a coil fitted\' That was it I\'d had enough I was going private. Two days ago I visited a private gynecologist, a woman who has given me so many answers she has changed my life. I have a uterus the size of a 12 week pregnant woman. With not 1 or 2 fibroids but several fibroids in my myometrium wall (the muscle wall) One of which is so big that when she examined me she told me to out my hand on my tummy and she pushed it. Apart from nearly shooting through the roof in pain, I could feel it!! She told me that what I have is not just one of those things and they are as bad as they make me feel. It was such a relief. I\'m not mad. I told her I had convinced myself that this had to be something more serious (the \'C\' word) as how could something that had been dismissed as something and nothing could be affecting my life so much. She said no my cervix looked healthy but my fibroids are bad. I was told that if we want another child then we basically have to try ASAP as this is only going to get worse. She couldn\'t believe that I haven\'t been seen before now and has now put me in for a hystoscopy to see if the largest fibroid has broken through my endometrium. If it has she can remove it. If not she can\'t as it will mean taking a large chunk of my uterus away. Although she is a private doctor she is doing this for me on the NHS. That alone said it all to me. I should have been referred in the first place as I was willing to pay. She did tell me that my only cure for this is a hysterectomy but she will be able to make things more bearable once I\'ve had another child but these procedures, due to where my fibroids are, will leave me infertile. I feel relieved to know I am being taken seriously now. Angry it was left so long that now I find myself in a situation where having another child is a race against time. Although I take positives in the fact at least I can still try. And thankful that I was blessed enough to be able to go private and see a wonderful woman. I will keep you all updated as to how the hystoscopy goes, but for now I send all my love to those of you living with this debilitating condition.xx

Gloucestershire GL6 7DS  [2013-09-14 08:32:53]

Toni 's story

My story

I started having problems from when my son was born as I tore badly with his delivery, the doctor who came and re sewed me back together didnt seem to have a clue of what he was doing, plus I passed my first clots after the birth but was told it was excess from the pregnancy. I am now 39 and for the past year I have been having pain on my second day of my cycle,this year I noticed that peroids changed then two months ago I passed a huge clot and alot of pain. I went to the doctor who gave me transmeic acid and that seemed to of helped. I went to the gynocologist and I am waiting for a scan. She did do an internal but said my womb was blocked. Yes, it has freaked me out but I still have to wait for that appointment. If it is confirmed that I do have fibroids I will need your group so I know I'm not the only lady suffering.

Coventry cv7 8jq  [2013-09-03 22:43:18]

Heidi 's story

Babies are still possible..don't give up hope

I had no idea I had fibroids..or should I say, one huge fibroid until we wanted to start a family. Apart from the usual misery every month, I just always thought I was one of the unfortunate sufferers from painful periods and put up with it. My 30s crept up on me and at 35, we decided we had to try for a baby or it might never happen. I was very lucky to fall pregnant fairly quickly..so far so good. Then at 8 weeks, I had to start wearing maternity clothes..my bump was growing at an alarming rate. An early scan revealed not multiple babies, but one baby and a 'mass'. Turned out I had one of the biggest fibroids my consultant had ever seen..it was terrifying. All of my birth options were ruled out, including a 'normal'caesarean. At 32 weeks, I measured 48 weeks pregnant, I was enormous. My only option was to have a 'classical' caesarean under general anaesthetic. In February 2007, I gave birth to our 1st beautiful son. 2 years later, after talking it through with my consultant and making a very difficult and emotional decision, we tried for another baby knowing that I had to go through the same horrendous op and recovery. In June 2011, our 2nd gorgeous little boy came into the world. I lost a lot of blood both times, recovery was very tough and I still have the fibroid which they are unable to remove due to it's size and position. It was the worst experience of my life but our boys were totally worth the pain. If you would like to read the entire story (with photos of the 15" scar...it's gory, you have been warned!), please visit my 'Baby Sunroof' story. http://www.giddygirlsworld.blogspot.co.uk/ 2011/09/birth-story-baby-sunroof.html

GRANTHAM NG31 9BE  [2013-09-02 13:43:28]

Cath 's story

On the path of fibroids

I am 43, healthy, fitness addict and mum of grown up sons. Started bleeding for a month then a week off then started again. Periods getting heavier over the last two years. Had a scan and have fibroids, they are small and there are several (doctor said that it was not important to know how many!) I asked for a hysterectomy now, i do not want years of treatments and I want the pain to stop. Have started taking that trax acid stuff. Cant stop flippin crying and am so fed up that this is not taken seriously. Huge respect to you women here that have put up with this for years. I am going to go back to the doctors in a few weeks and am going to keep on going back until this is sorted........ Wishing you all the best.

Cornwall PL158GX  [2013-08-22 19:25:51]

Angela 's story

Road to recovery

Hi I was diagnosed with a 7.5CM fibroid in my uterus Sept 2012. I was fitted with an IUD,to control heavy bleeding. The Marinea caused pain and a continuous discharge.I was monitored every two months,then in March 2013 the fibroid started growing at a fast rate,to 10.5CM, pressing on my bladder causing frequent trips to the loo, and an abdomen that looked pregnant. I changed consultants. My new consultants treated me with Lupron injection, and booked an Hysterectomy in 3 months just in case. The Lupron injection was OK, main problem was aches n pains the day after, and headaches for 2-3 weeks each morning, but no hot flushes. Two weeks later exterm bleeding caused an emergency hospital visit, then given hormones as well to take dailey. After 3 months the Lupron had only reduced the fibroid by 1CM, and an Hysterectomy was postponed due to probability of heavy bleeding during the op. I was due for my 2nd Lupron injection, but my BP had gone way high, and I was getting worried what was causing it. Instead I saw my consultant who offered ( no guarantees) a Hysteroscopic Myomectomy. I immediately said yes, and two weeks later its the best decision I have ever made. The fibroid was the largest the hospital had ever removed by this method. I have to take it easy for six weeks, with no standing for longer than 10 mins the first two weeks.My cervix ripped due to the 3.1/4 hour operation and their was potential for proplase if instructions on recovery not adhered to. Overall extremely pleased with result

Leimuiden ( ex pat) 2451VB  [2013-07-24 13:58:41]

Kelly 's story

12cm Fibroid, Major Myomectomy Bham

At my 8 week pregnancy scan I was told I had an 8cm fibroid, tbis grew to 12cm by 35 weeks. The obstetrician told me after my c section that he tucked it back in and see my GP in 3 months for a referral for removal. In June I saw Dr Bagdadhi at City Hospital Birmingham, for a consultation and was told due to the size it would be a major op, with vertical incision. It would be booked in 3 months if I had lost some weight, still shell shocked I was given Prostap straight away. I had my second jab last week and have been bleeding now for 2 days no real pain, but twinges. Could this be the fibroid shrinking? Has anyone else had a myomectomy at city? with Dr Bagdadhi?

Birmingham B43 5QE  [2013-07-22 16:55:04]

Sue 's story

Would love some help with the jargon please

Hi, I am a 39 year old mum of 3. I have had two ops to remove polyps, the first 4 years ago the second 2 years ago. When I started experiencing heavy painful periods, in between bleeding and odd stomach pains I assumed they were back. On being referred to the hospital for scans they said I had several fibroids and I was passed on to the gynaecology department. I have recently had my appointment and today received a letter that I was hoping someone could help to put in laymans terms. Here is the letter... I met with Mrs B in the abnormal bleeding clinic. She had been referred because of intermenstrual bleeding. She has a regular cycle of 7/28 days which she decribes as heavy. She is passing clots, using double protection and has to rise at night. She also has pain for which she is taking mefanamic acid and co-codamol. The ultrasound has revealed an anteverted uterus with multiple small fibroids intramurally but also an intracavity fibroid of 14mm. On examination, her abdomen was soft and she was tender in the left fornix. The uterus also felt bulky. On speculum examination, she has a multiparous cervix that was mobile and the uterus was anteverted. She consented to hysterscope, however the hysterscopy was unsatisfactory. She has an 8cm cavity and it is filled with polyps and fibroids. Neither ostia were seen. I have taken a pipelle biopsy. She then goes on to say that she is arranging for me to see the consultant to decide the best next step. So far it is looking like a resection but may be a hysterectomy just removing the womb but not the ovaries. I would be so grateful if someone could explain some of the more technical terms for me. Thanks

Swindon sn2 2lw  [2013-06-29 22:19:18]

B 's story

Laproscopic Total Hysterectomy

I have suffered from multiple fibroids for years.In 2010 I had an Endometrial Ablation,under Mr Tariq Miskry,St Mary\'s Hospital in Paddington,London. The alternative was a total hysterectomy at University College London Hospital.I wasn\'t ready for a hysterectomy,even though I was 43 & had completed my family. The procedure went well,I had no problems at all, until Summer 2012 when my abdominal pains returned. I had trouble with frequent urination/not emptying my bladder fully, back pain etc. I hardly slept at nights as I visited the bathroom often.My stomach swelled so much I couldn't fasten my skirts/trousers. My brothers assumed I was pregnant. I was referred to UCLH who offered a Total Abdominal Hysterectomy, with possible removal of ovaries.The surgeon planned to cut me vertically. The idea of possibly losing my ovaries & the vertical cut scared me.I questioned the type of cut, & he explained the fibroids are too big to be removed by a bikini line cut. I decided to see Mr Miskry for a second opinion. He disagreed with the removal of my ovaries, unless their was a problem with them. He dismissed a vertical cut,& suggested it could be done laproscopically,even though my fibroids were very large. He started me on GNRH injections to shrink the fibroids. I had 3 injecions, each one monthly.The injections do have side affects: menopausal symptoms: hot flushes etc. I didn't enjoy it, but was desperate to avoid a vertical cut & the loss of my ovaries. On 29th May 2013 I had my hysterectomy.I am so happy with my choice.I had 3incisions plus a cut in my navel for the laproscope, you can hardly see them,it's amazing.My tummy is so flat.I was on my feet the day after my surgery,& only spent 2 nights in hospital. Ibuprofen & Co-Dydramol dealt with any pain. Ive purchased a pelvic floor exerciser & take a walk every day, increasing the distance gradually.I went out to dinner 11 days after surgery. I plan to return to work end of June. In regards to sex, it's too early of course, so I have no idea if the loss of my cervix will have an affect. However, my partner and I have enjoyed stimulating each other without penetration,& my libido was great.

London N17 9XE  [2013-06-14 19:46:15]

Nicole 's story

Successful op but menopausal symptoms have stayed

In November 2012 I was dagnosed with a large fibroid the size of a 15wk pregnancy. By January 2013 it was 18 wks! I was advised to have a hysterectomy but even though I was 42, I was childless and not ready to give up all hope just yet. So I was given a fertility blood test and started on a course of decapeptyl. April 2013 came, still no results from the blood test so i had a succesful bikini line myomectomy which removed two large fibroids gving me my flatter tummy and losing my constant need for the loo. BUT I have been left with menopausal symptoms and no more periods and no one can tell me why for sure. So successful op but sadly not the possibilites I wanted to be left with.

Bristol BS34 5EP  [2013-06-11 12:36:33]

D 's story

Fibroids

Am an Afro Carribean female who has a fibriod. Am currently on the coil however I am still expereincing pain and heavy bleeding despite being on the coil for 3 months. I have been told it could take up to 6 months for the coil to be effective. I have had painful periods since my first period began when I was 14 years old. I am now 36 years old. Symptoms of painful period involve thorwing up if I have eaten shortly before pain begins, so I tend to avoid eating any food until pain has gone. I have recently spoken to another female of Afro Carribean heritage and she said that I need to be careful and watch my eyesight because she feels that fibriods has affected her sight. Is this true?

London SE6 2AR  [2013-06-05 16:45:16]

Margaret 's story

Always dismissed

I'm 52 and have had painful, heavy periods all of my life. In my 30s I had fibroids but a D&C sorted them out. About 2.5 years ago my periods started to get much heavier and more painful and I noticed I was urinating frequently and felt pressure on my bladder. Was also getting lower back pain. I'd just moved house and had registered at a new GP surgery and my new doctor referred me to a local clinic for US pelvis transvaginal. When the woman examined my uterus she said words to effect of "wow you've got multiple fibroids and an ovarian cyst, how have you coped?". With that confirmed I assumed it would be straightforward to get treated but when I saw the GP and said I knew I had them, she said the clinic were wrong to tell me (?!) and said we should wait to see the scan result so that she could give me the diagnosis and decide on the course of action. Those results never arrived. I started seeing a different doctor (same practice) who was more sympathetic but his view, each time I went back with increasingly bad symptoms, was that I would soon enter menopause and it was better not to have invasive procedures if that was about to happen. Basically it boiled down to two options; ignore and wait for menopause or have a hysterectomy, which he said was pretty drastic. There were no other options as far as he was concerned. Each time I suggested it might not happen soon and that there was a history of late menopause in my family etc, but he seemed sure it was all unnecessary. I went back a few times over the next two years but each time was dismissed as near menopausal even though things got worse. I had all the blood tests for menopause/anaemia etc. They confirmed nothing and the periods, lower back ache and bladder/UTI problems kept coming. Tranexamic acid didn't help - it just made me have clots later in the cycle which are excruciating to pass. I just gave up and felt miserable and unhappy. Then, a few weeks ago I got a call from the GP practice nurse. She asked why I had been avoiding a smear test. Told her I wasn't but my situation meant it would be hard to get a result as I have bleeding or discharge for most of the month. Recounted my experience (at her insistence) and she was so aggrieved on my behalf, that she made an appointment there and then for me to see the GP. She told me to insist on another scan but at the hospital this time. Had it last weekend and it confirmed that I have an 8cm fibroid pressing on bladder, multiple fibroids and an 8cm cervical polyp. The hospital sonographer was fantastic. She also told me she could still see follicles which would suggest I am not menopausal, which didn\'t surprise me. She gave me lots of advice, printed out the test results for me to take to the GP and I'll see him this week. She too told me not to put up with it, and insist on a referral to a specialist as this is seriously diminishing the quality of my life. I have been saying that for two years but it helped to hear it from her. I suppose the point of sharing this is to say don\'t give up, particularly if you are in my age range. We are all different. I have no idea what will happen next (not a hysterectomy that\'s for sure) but thanks to the intervention of those 2 women I feel confident enough to stand my ground and get this resolved.

London SE153BW  [2013-05-28 23:03:40]

Mojisola 's story

MS

I was diagnosed when i was 24yrs old, first i had myomectomy and the fibriod regrow, then i went in for UAE..Uterine Artery Embolization which lead to my menopause. I feel sorry for anyone going through that pain i went through hell myself. i wish the govt will take more interest in this women problem as the pain associated to Fibroid.

London SE 1 6 RQ  [2013-04-16 17:27:32]

S. 's story

Slow to Act - no good info

I was diagnosed back in the 90's. My then GP (Birmingham) although very sweet,was miss guided. He said "they're small, tiny in fact and wont cause any problem, don't worry" Roll forward to 2008 I had forgotten about the Fibroids! I had moved from my home town. I went to new GP Practice in the Greater London area. It took a further 2years of going back and forth with symptoms. I was actually laughed out of the surgery room the first time with "So you thing you have cancer??? (Unfortunately I had chosen the day that Jade Goodie had past away and the media was advising women to go to GP's). I told the GP at that time no I don't think its cancer, i just know something is not right. Things changed when I remembered I had a pre- existing condition. New scan found around 5 good sized growths; possible more but they were unable to see fully. The only option I was offered by my GP (no specialist involved) was full hysterectomy. I was 45 years at that time and not yet found Mr Right or had a child. They just said 'why would you want child at this age? I felt my opinion was truncated by the 2 GP's I saw on later dates. *I would like to have the GP's educated and their bedside manner improved. *More options should be made known to us! Only through on-line research have I found other means to treat my fibroids. I'm now (nearly) 47 and my fibroids have recently become very large and painful. They're pressing on my bladder, back and stomach….I look pregnant! I'm fed up of the questions and stares around my belly. I want to have FIBROID EMBOLISATION as I feel this would be the best option for me…..but will they see that?? *How do I get my options heard? *Can I request to go to a more sympathetic hospital/clinic? Or even go to a different town? (I saw on line that Birmingham have a well established Fibroid Clinic (private) which is also link to one of the NHS hospitals (Heartlands, not my fav hospital though). *Why are we having to 'battle' for appropriate treatment? Currently off-sick with severe Fibroid associated pain. I have also been misled into thinking/believing that the Fibroids would shrink as I reached the menopause. NOT SO!! They in fact, in most cases have a growth spurt due to the increased oestrogen in our bodies at that time or leading up to that time. Just to add ALL my London GP's were female, I think its GP's in general that have a problem.

Greater London TW12 1DJ  [2013-04-13 16:31:00]

S. 's story

Slow to act, no good info

I was diagnosed back in the 90\'s. My then GP (Birmingham) although very sweet,was miss guided. He said \"they\'re small, tiny in fact and wont cause any problem, don\'t worry\" Roll forward to 2008 I had forgotten about the Fibroids! I had moved from my home town. I went to new GP Practice in the Greater London area. It took a further 2years of going back and forth with symptoms. I was actually laughed out of the surgery room the first time with \"So you thing you have cancer??? (Unfortunately I had chosen the day that Jade Goodie had past away and the media was advising women to go to GP\'s). I told the GP at that time no I don\'t think its cancer, i just know something is not right. Things changed when I remembered I had a pre- existing condition. New scan found around 5 good sized growths; possible more but they were unable to see fully. The only option I was offered by my GP (no specialist involved) was full hysterectomy. I was 45 years at that time and not yet found Mr Right or had a child. They just said \'why would you want child at this age? I felt my opinion was truncated by the 2 GP\'s I saw on later dates. *I would like to have the GP\'s educated and their bedside manner improved. *More options should be made known to us! Only through on-line research have I found other means to treat my fibroids. I\'m now (nearly) 47 and my fibroids have recently become very large and painful. They\'re pressing on my bladder, back and stomach….I look pregnant! I\'m fed up of the questions and stares around my belly. I want to have FIBROID EMBOLISATION as I feel this would be the best option for me…..but will they see that?? *How do I get my options heard? *Can I request to go to a more sympathetic hospital/clinic? Or even go to a different town? (I saw on line that Birmingham have a well established Fibroid Clinic (private) which is also link to one of the NHS hospitals (Heartlands, not my fav hospital though). *Why are we having to \'battle\' for appropriate treatment? Currently off-sick with severe Fibroid associated pain. I have also been misled into thinking/believing that the Fibroids would shrink as I reached the menopause. NOT SO!! They in fact, in most cases have a growth spurt due to the increased oestrogen in our bodies at that time or leading up to that time.

Greater London TW12 1DJ  [2013-04-13 16:20:54]

A 's story

Dilemma

I'm 50 and have had a fibroid for at least 15 years. I had it when pregnant with my second child when it was the size of a grapefruit but it didn't cause any problems at all. At no point did a doctor suggest doing anything about it. It's very large now (about the size of a 4 month gestation)and is visible when I wear certain clothes or lie down.I'm used to it now. I have fairly heavy periods and a little discomfort at times but not pain. It doesnt bother me that much really. However, I went to a consultant to check it out and he said straight away that I should have a hysterectomy. I dont really want to unless its a life or death situation, especially after having read the recovery time, and possible complications afterwards. Could be a can of worms. I'm assuming that I'll soon be having my menopause, in which case it will stop growing and possibly shrink a little. I'd rather wait and see what happens after menopause really. Added to this is the complication that I'm a single mother of two teenagers and the main wage earner. I'm self employed so don't get any sick pay. I literally cant afford to be recovering from an operation for up to 8 weeks or longer if problems occur. Also there will be no-one to help me recover afterwards, although a friend has offered for a week but you cant expect that for long. I have no family except very elderly parents so they wont be able to help in a practical way. Basically I have a dilemma and dont think I can have surgery unless a life or death scenario. It seems the medical profession assume a lot about people's lives. Suggestions from those with similar experiences would be helpful. Thanks

Matlock DE4 2GB  [2013-03-30 13:09:31]

A 's story

Dilemma

I'm 50 and have had a fibroid for at least 15 years. I had it when pregnant with my second child when it was the size of a grapefruit but it didn't cause any problems at all. At no point did a doctor suggest doing anything about it. It's very large now (about the size of a 4 month gestation)and is visible when I wear certain clothes or lie down.I'm used to it now. I have fairly heavy periods and a little discomfort at times but not pain. It doesnt bother me that much really. However, I went to a consultant to check it out and he said straight away that I should have a hysterectomy. I dont really want to unless its a life or death situation, especially after having read the recovery time, and possible complications afterwards. Could be a can of worms. I'm assuming that I'll soon be having my menopause, in which case it will stop growing and possibly shrink a little. I'd rather wait and see what happens after menopause really. Added to this is the complication that I'm a single mother of two teenagers and the main wage earner. I'm self employed so don't get any sick pay. I literally cant afford to be recovering from an operation for up to 8 weeks or longer if problems occur. Also there will be no-one to help me recover afterwards, altough a friend has offered for a week but you cant expect that for long. I have no family except very elderly parents so they wont be able to help in a practical way. Basically I have a dilemma and dont think I can have surgery unless a life or death scenario. It seems the medical profession assume a lot about people's lives. Suggestions from those with similar experiences would be helpful. Thanks

Matlock DE4 2GB  [2013-03-30 13:06:38]

S 's story

Dont give up hope

I am 36 have had fibroids an have beening trying for a baby for about 10 years at first they said it wouldnt affect me being able to have children. When turned 35 I had a Myomectomy 2 months later I was pregnant. Dont give up hope. It can happen.

Essex IG11 0HA  [2013-03-06 14:58:51]

Nichole 's story

My Story- Advice Welcome

Hello, I found your website and the information was useful... but there Is a major problem I have so many answers that have not been answered in someone with a case like mine....I will try to make this as brief as possible to try to explain to you the situation and I assure you I am at the end of my rope with whats happening to me and in hopes ANYONE can offer me some advice of what I can do...I feel helpless and suffering every day. Please help me or tell me something that I could possible do to help my situation. I am a 28 , year old heavy set black female and my current residence is in Alabama(USA(. I have had problems with my female parts all my life. At the age of 8 months old I was diagnosed with cancer , they did surgery removing this cancer from the front and back of me. I had a Germ Cell Tumor, 90 percent it was removed and the remaining 10 percent was treated with Chemotherapy. I have been in remission since then. I had no other abdominal troubles until i was 18/19 about 2002/2003 and had 3 GIGANTIC Ovarian cist that completely destroyed my right ovary. They didn't even se the things when they did the Ultra sound so they dismissed it at first, I was in pain , took forever to get any help. Kept going back and they finally did a Cat scan I think it was ( the one you drink the dye) and saw the large cist. Finally got the doctors to do the surgery and the right ovary was completely removed but the rest was left. I honestly wanted a hysterectomy then , I made up my mind from the day i was a kid I never wanted children and still stand EXTREMELY strong to that to this day. These cist were the size of a grape fruit , lemon and an orange. Later I had to have some scar tissue removed again because I was having pain but I am starting to wonder if it didn't lead up to what I am about to tell you. I have always had horrible periods with sometimes nearly crippling pain and heavy bleeding. I have always blown off and been told to just Deal with it and they did try me on birth control for a while but it never really seemed to help or regulate them much. I usually got one bad one a month or sometimes even two for as long as I can remember. Not much really helps over the counter when they get bad but i cope... My real troubles began December of 2012 when I had two periods and started to have constant pain much like i did when I had cist before. My body began to go cray, insane emotional roller coaster , hot flashes , nausea , sever cramps. I felt like i was going through menopause and about to loose my mind. After I did not get a period at all in January 2013 and suffering the insane roller coaster I was about to loose it then and sought a obyn, when I was told the doc wouldn't see me because he left in an hour I reluctantly went to the ER for my pain. I was basically told they couldn't do anything for me and sent home suffering. I rescheduled for the next day and tried to tell him my history of cancer and the cist I have had and about how my body was going nuts. He pretty much did a 2 second poke , told me to get a ultra sound. When I asked what to do about my symptoms he told me he didn't know. I was left upset and just frustrated about this whole thing. I went to get the test done and was slammed with crippling pain, I barely was able to drive myself to the ER once again. The ER looked at my ultrasound and told me I had a large fibroid tumor and cist, couldn't do anything go see a obyn and gave me some pain medicine and a few days off work.. So I rescheduled AGAIN with this guy and this time i brought my mother who also agreed he treated me poorly. He said they wouldn't do anything for me because of my weight even if he said a hysterectomy is what i need and WHAT I WANT I have wanted it for 10 years! so again I was refereed to ANOTHER obyn. He said there was no cist but im pretty sure he didnt look at the actual ultrasound and just the paperwork read out which had a mistake on it. The Firboid is 7cm so it is a large one. this whole time I am struggling to do my job and work in pain like this every day and still am. I Saw these two new obyns Dr. Light and Dr. Acuff and they know of all this that I have explained to you. They want me to try the Deop shot with no estrogen for 6 months but I really do not think I can take this for 6 months.. I am on my knees and they are refusing to give me the surgery I need... They have tried me on the darn hormonal stuff before and it didn't work. Its been about 2 weeks since the shot and I have no relief for my symptoms, over the counter stuff doesn't seem to help a whole lot and they did give me something called Tramodol but that didnt do squat either. The only thing that seems to help me is something that knocks me out so i can just sleep . They said I also had a introverted uterus and my cervix is low. I already got the feeling in the end I will have suffered all this time if i can even make that... for it only to end in surgery. I want the surgery but they wont give it to me because they say I am a higher risk because of my weight. In all my life my weight has not been a issue for me it has always been everything else. I just want my life pain free and I want my life back... The other nagging thing that is bothering me they didn't seem to want to test at all if this was cancer or not...and that disturbs me. I know they are trying every non invasive procedure first but this does not help the here and now. They say all my hormones and blood work and all that came back normal but not one mention or other scan than a ultra sound to tell me if i have cancer or not. I am having the bloating, Pain constantly on and off severity from light to sever , haven't had a period since December of 2012, Sever fatigue and always feeling weak.. ,random nausea especially with the more intense pain.. pressure all the time and feeling full down below , incontanaces sometimes.. he said it wasnt near my bladder but I say bs then what else is causing it? And worse of all the depression worsens day by day.. Doing my job is like walking up a mountain now...and they want me to go through this for 6 more months...Why do they make women suffer like this? I will be paying out of pocket for this surgery but I dont care about the money I just want to live my life pain free...They say it is not life threatening but it is tearing my life and me apart. Even if I did have insurance it wouldn't cover this surgery because its considered " elective" even if I need it. So I am asking ANYONE WHAT can I do? What can I do AT ALL to help my symptoms, or if there is anyone you can refer me to that you know will help me without a doubt. IF anyone can offer me some advice I would greatly appreciate it. Thank you greatly for your time. Nichole M.H.

Madison,AL 357777  [2013-03-05 08:41:44]

Sharon 's story

Mrs

I am a 40 year old women who loves life and what it has to offer but many of my dreams have been crushed as I have been suffering with fibroids for many years. I started my period at the tender age of 8 and have suffered with severe pains and very heavy bleeding ever since. My husband and I had experiebced difficulties conceiving and we were advised that I would never be able to conceive. I had suffered a miscarriage because of the fibroids which was devastating but following a myomectomy we were blessed with a baby girl who is now 11. I now have about 15 fibriods and severe bleeding has left me house bound on many occassions affecting my quality of life. The largest fiboid is the size of a 28 week pregnancy. As we had tried and failed to have anotherchild I made the decision to have a hystereomy which was attempted December 2012 buy not completed because of adhesions of the uterus to my colon and bladder. The surgeon recommended another surgery in 3 months with a team including a urology surgeon and colonoscopy. I am now in the position that due to the complexity, the likelihood of having a permenant colestomy bag is 99%. Due to the severity of the bleeding;I have been told I have no other choice but to proceed. I desperately need some help and advice. Can you help me?

London CR0 8XQ  [2013-02-26 21:51:09]

Victoria 's story

Removal of fibroids

Am 28 years old young lady and suppose to go for operation to remove fibroids only not the whole womb on the 13 march,i got 2 of them th big 1 is 6.45 and small is 4.68,and they grew outside the womb,i want them removed because they making my stomach big like am 5 mnths preg also i hv pain like PP'S all the time,olways filling bloated and very moody,right now i dont want to have kids but am sure 1 day i will so i will like to know if this operation wil affect that and the life after the operation.

Gaborone +267  [2013-02-26 09:06:27]

S 's story

Louise

I had suffered for some months with heavy painful periods. I then passed several extremely large clots which scared the hell out of me. This was when I knew there was a problem. Went to local female clinic 05.12.2012. A week later went to A & E with excruciating pain & was prescribed co-codamol 30/500 which helped. Had blood test a week later & was taken in for an emergency blood transfusion as my blood (haemoglobin)count was 6.9. A couple of weeks later my blood count was up to 9.7. I had ultrasound on 07.01.2013 which found 3 large fibroids. I was then referred to a gynaecologist who I saw on 21.01.2013. On 04.02.2013 my blood count was 8.9 following more heavy periods. I have now been referred to Birmingham Fibroid Clinic & am currently awaiting a date. I had never heard of fibroids before all this started. I do feel that they are not treated with the urgency they require as they have a huge inpact of all aspects of your life. I feel frustrated with suffering from anaemia & the terrible pain daily. My GP has recently suggested Spatone (iron rich mineral water) which is great if like me, you are unable to take Iron tablets. I also see a Homeopathic doctor who has helped with my anaemia & after doing my own research I am taking Vitex (Agnus Castus) 1000mg x 1 daily. I have found so far that it has helped the swelling, bleeding & pain. I hope my story helps/is interesting to others.

Lichfield WS15 3BS  [2013-02-20 16:14:03]

A. 's story

Huge fibroid and open myomectomy

Hi, I have been looking at the posts but can find nothing that matches the size of my fibroid, and thought it was worth contributing in case anyone else has a similar size in the future. I am 49 and the size of a 28 week pregnancy at the moment and its like carrying a sack of potatoes on my stomach, causing severe back pain now and obviously a few toilet problems. I had them before as pedunculated on both sides, and got rid of them by using chinese medicine and acupuncture. They had both got to the size of grapefruits according to a ultrasound scan. After 6 months the very noticeable balls had gone and all pain, uterine and back problems had disapeared and a scan found no trace of them. Sadly 18 months later I rolled on my stomach in the bath and realised I was lying on a flat ball. I had had no symptoms at all. I went back to the chinese doctor but he said that Chinese medicine has limits and this fibroid was too big to be treated effectively. It was right across my stomach. I say this because Chinese medicine worked the first time and it may for others of you up to a size a bit smaller than a grapefruit. If I had kept up a 6 month on/off rotation I would not be facing an open myomectomy now. I had just moved and due to it taking a ridiculous 6 weeks to get re-registered and another few to see a doctor, who sent me for an ultrasound which I had to wait 2 months for and then another 4 for a gyn visit, the fibroid had grown alot in the meantime. The Registrar doctor I finally saw baggered me into a hysterectomy which I did not want and kept refusing, but she said I was at real risk of kidney failure at the least and especially if I waited for a second opinion. She schduled this for 3 months time. I felt bulldozed into having an injection I did not want to shrink them right there and then, and had to be persuaded by a counseller at the hospital to have it. I had a severe reaction to the injection and left me unable to function properly until it wore off. Not just hot flushes and tiredness, it was like an extreme version of the menopause according to friends and family who have been through the real one. It serverely affected my business. When I was more functioning I started looking at other options, and realised that most of the top surgeons did not recommend a hysterectomy, and I was no worse off than a heavily pregnant woman and no more at risk of kidney failure than most pregnancies. I also found one of the top surgeons was in my hospital trust area and paid to see him. He apologised to me for the treatment I had and I am now scheduled for an open mymectomy in the middle of February 2013, having had to wait for the fibroids to regrow in case there are small ones the injection shrank, so he can remove all of them. I have no interest in a hysterectomy after having half a dozen friends who have had one due to fibroids and all have problems of various sorts or lack of sexual sensations, which is a horrendous percentage. There are also alot of studies showing the benefit of keeping the womb as it can help against heart disease, something my family suffers from. I would rather save up and pay for occassional scans before menopause to see if I need to resort to chinese medicine again if any regrow. Its now 2 weeks to the op and I am starting iron and vitamin supplements to help the recovery and healing process as I do not heal well.

Hampton tw12 2ds  [2013-01-31 09:12:48]

Sarah 's story

Sarah Chapman

I am 49 and have 2 fibroids of about 7 cms each sitting on top of each other, which is distorting my womb. I have been prescribed Norethesteone and Transexic Acic in large doses to stop extreme bleeding. Initially these worked but now they are doing very little. I now have flooding frequently, last week i bled all over seats in a pub, very embarassing so do not want to go out! I am awaiting a consultants appt which is some 3 months away. I would like to try the new Esme drug. Has anyone tried it, was it successful at stopping the bleeding?

Southampton so453rb  [2013-01-27 11:10:19]

S 's story

Miss s haughton

Went for a routine 20 weeks anamoly scan as i am pregnant and after my scan was asked to see the consultant in the ante natal clinic went inside to see the consultant and she told me that on the scan they had found a fybroid at the neck of my womb, I really didnt know what this was as ive never heard of this? ive heard of thyroid by this time i was nervous and had all different thoughts going through my head the consultant has advised me that i come back for a routine scan which is monday just so they know what my options are as im expecting in most common cases they deliver baby few weeks early by c-section

Birmingham B31 5NY  [2013-01-08 18:03:30]

Amanda 's story

Fibroids

Got caught for my son by chance had a scan , which showed a fibriod, they sed it should shrink and go,my son is 6 now, i suffer with heavy periods,there long and i clot,it drains me,im on iron tablets,today ive been to hosptital had a virginal scan and my fibriod is big my womb is swollowen,i go wee alot,and others problems, so now i have no choice , because it so big and my womb is so swollon im havein a hystersctomy, my overies are going to,but it seems the fibriods never went they just grow,so im happy to have this done now because ive gone throu alot ...

Somerset ta6 4ln  [2012-12-20 20:29:30]

Michelle 's story

1 week of fibroids

I 'm 35years old and have read through the articles but wanted to write my story as I haven't yet read one similar and wanted to share it in case someone else has a similar experience. I had absolutely no symptoms of fibroids at all and no clue that I had 'mega' ones growing in my uterus. in just 1 week, I've gone from being a really active young woman. To having kidney (ureter) surgery the day after they told me I had fibroids and then a week later expect to have further complicated surgery to remove the large fibroids. A few weeks ago, I went on holiday to the Caribbean, 2 days into the holiday my left leg and ankle started swelling. No pain at all but just swollen. When I got back to the UK two weeks later, my leg was still swollen so I visited the GP who due to the long flight, suspected DVT, however, subsequent tests: blood, urine, xrays, ECG etc ruled out DVT. I 'then' was referred to a Vascular consultant who confirmed again that there was no clot but sent me for an MRI & Ultrasound scans. They discovered that I had multiple fibroids, my right kidney was not working and that my uterus was the size of a 26week pregnancy. Complete shock, I\'m very active, have a busy job, go to the gym and play tennis 2-3 times a week. He referred me to a Gynae consultant. I think one of the reasons it went completely undetected is that the large mass was growing sideways not outwards. I had no symptoms at all. My periods were light and had no pain or problems using the toilet. My tummy looks a little chubby but not like I\'m carrying such a large mass. However, being so big the fibroids have put pressure on the tubes (ureters) connecting my kidneys to my bladder so much so that my right kidney has stopped working properly and doctors are very concerned about my left kidney. So operated straight away to protect the tubes. The fibroids are putting pressure on a big vein in my leg which means that I\'m very high risk for developing a clot so they want to operate really quickly. This is all in a week of being told I have fibroids. No time to shrink them, offer the keyhole marvels that I\'ve been reading about, just straight in for a 4-5 hour operation to remove them

London SE1 9RT  [2012-08-21 14:19:40]

A 's story

New drug - ESMYA

I started to get large blood clots in December 2010 during my period. I had been having incresingly painful periods for about 3-4 year prior to the presence of the blood clots. Once the blood clots came my period pains got worse and worse and I would honestly liken them to pain experienced during miscarriage. I went to the Doctors complaining about the pain often at emergency appointments but was told me that I just had very severe period pains. I researched various medications and asked to be put on Naproxen. This helped with the severe swelling I would experience before, during and then after my period. I also suffered from severe constipation and was diagnosed with hidradenitis suppurativa. The breakouts from this disease matched my ovulation and periods. I had to push to get to see a Dermatologist but eventually did and have been taking oxytetracycline, which I somehow think has helped with my problems associated with my bladder when I am having a period. The crunch came when I started to have deep long lasting spasms, the pain off which I cannot describe. It felt like it was coming from my back passage. Once again I was told that I had severe period pain. My daughter was home from University and caught me in pain and made me go to Hospital. From there I had a scan which showed that my womb is basically full of fibroids. The largest ones are between 3-5cms. I was trying to get pregnant last year (before I turned 40) and so I told the female Doctor that I want to maintain my fertility above all else. The Lady Doctor put me forward prior to my Gynaecologist visit (last week) to try a new medication named ESMYA which has just been cleared for use in the UK, (April 2012). I took my first tablet today and will have to take the meds for 90 days. Apparently it is a pre operative drug that can shrink the fibroids. I may have to still have an operation but many women who trialed this drug did not have to have surgery. The medication is very expensive indeed but I would urge all who are suffering from fibroids and who want to maintain their fertility to look into this new drug. If possible, I would also like a specialist view from here on this here ESMYA medication - as well as experiences from others who have taken the medication. I wish you all well and will update the outcome of my story.

Newark NG24 1RU  [2012-08-18 19:09:25]

Marie 's story

Failed UFE

Diagnosed with Uterine Fibroids 4 years ago which are now the size of a melon.It is leaning on my uterer and my kidney is distended but causing no pain just a little discomfort. Had a UFE on 25th July 2012. NO symptoms 3 weeks on no pain no fever no discharge. Fibroid feels exactly the same size. I am worried about the damge to the uterer or my kidney or bladder and I don't know if i will now need a hysterectomy or a second UFE would work.

Falkirk FK4 2DJ  [2012-08-16 23:53:24]

ML 's story

Marie-Lou

I am 41 and married. My fibroid was discovered recently just over a year after me and Steven my husband had a failed IVF & ISCI treatment. I have become anemic due to heavy bleeds and I started fainting in February this year. This has been another blow to our already threatened chance of having our own baby. We have a combined medical history that is somewhat ridiculous when it comes to conceiving naturally, we have been hoping for over five years now and have lost hope and patience with it. We support each other through it all and make the most of what we do have in many many ways we have a lovely life together and allow ourselves to feel sad when we need to, it helps having to sweet dogs who are are very loved. Pets are such good friends and healers. I am a professional performer and choregrapher and although I have a good level of fitness I have struggled with managing my work and energy levels since having heavy and frequent periods the aniemia has been tough on me for work but this is how I earn my living so I have to get on with it and give it 100 % , it helps to do a job I love and I have found ways of managing. I am lucky to work with very supportive people who understand if I need a break in rehearsal or a bite to eat. I have suffered with depression as a result of all this but I am on anti depressants which have helped me so much. I now feel it is lifting my fIbroid will come out in 4 months, I now know why I was feeling so tired and faint all the time and I am on iron tablets and eating as well as I can . We are now hoping to adopt a child maybe 2 and we have started the process this has given us a new purpose and reason for living. After loosing both my mum and dad in little over a year between 1988 - 89 as a teenager, I think I can turn almost any crappy situation around eventually. something is taken away but I hope that in return something will be given. Thank you for your other stories its been a help to me xx

Cirencester gl7 2ba  [2012-08-13 19:58:58]

Kiana 's story

Miss

I am 18 years old and I was found with a 10x11cm fibroid at the bottom of my uterus next to the cervix they found the fibroid when I was 20 weeks pregnant and saw I was dialating at my 23 week scan so I have a cervical stitch put in place, after the birth of my son on the 22/06/12 which the fibriod caused me to loose loads of blood! After being discharged from hospital iv had 5 weeks of non stop problems I been in and out of hospital with viginal pain they just put it down to just having a baby I also had a scan to check my fibroid and it was fine by scan ever since I was 2 weeks post partrum I had loads of infections on 29/07/12 I got rushed into hospital because I was lossing loads of blood and passing blood clots the size of dinner plates I went into shock I wouldn't stop bleeding when it finally got lighter I was sent to the ward sunday morning from A&E I was scedualed a operation to see what was going on inside me on monday but again I gushed out bleeding very heavy I was rushed to a ward where they could keep a closer eye on me I had a viginal examination no doctor had a clue what they was feeling inside me they thort it was a absess I had been on 6 antibotics to get rid of the infection through a drip but it didn't work when I was took to Theatre a hour later I was suffering from severe stomach cramps I couldn't move I was put to sleep and they found they my fibroid was rotting away dropping through my cervix my stomach had been contacting to get the fibroid out but it couldn't get it out they was shocked my body coped 5 weeks fighting the fibroid and infection I lost 4 pints of blood I had to have a blood transfusion and my iron levels dropped to 7 the hospital said I was lucky I came when I did because my body was about to give up I am now in hospital recovering I just wanted to find women who have experiance similar things to me I am probs the youngest on here

Manchester M34 7GS  [2012-07-31 10:54:19]

H 's story

Fibroid still growing

I am 43 with no kids. In 2008 I was treated for endometriosis and fitted with a Mirena coil to prevent reoccurrence of issues. My periods became frequent but light, and I was relieved to be pain free. In August 2011 I began bleeding heavily. Three weeks later I saw my GP who referred me to a gynae specialist GP, who suggested that my Mirena needed changing. However, they could not find it so I had an ultrasound. The sonographer told me I had a fibroid, which had grown since 2008. I was surprised as my mother and aunts have not had fibroids, and Mirena is used as a treatment to shrink a fibroid. They tried again to find and remove the Mirena, but no joy so I was referred to a gynaecologist. I had a Zolodex implant (experienced emotional mood swings & panic attacks) & had a hysteroscopy/DNC in April 2012, during which they changed my Mirena. Since then I have continued to be very emotional, have had two periods a month, with a bout of flooding (prescribed mefanamic acid), bloating and pain. Today I had another ultrasound with the same sonographer. She says the fibroid has grown, changing the shape of my uterus, so the coil is not in the right position. She was surprised by the continued growth, especially given the Zolodex & Mirena treatments. Will have to sit tight now and see what they want to do. In the meantime I am in considerable discomfort and fed up!

Horsham RH123SR  [2012-07-17 16:26:03]

Kerry 's story

Fibroids & Me

I found i had fibroids in March 2009 just by having a routine ultra sound to locate my coil. (my coil had been causing me some pain) By Sept 09 my fibroids had grown one=11cm and two=13cm. I was told i would have a Myomectomy to have these removed. (both my nan and my mum had hysterectomies to remove theirs) I was nervous but i was also angry with the pain, boated look they caused me so i just wanted them gone. Before my op was due my husband took me and my two sons to disney land paris to cheer us all up:) Last year sept 2011 another ultra sound found that i again have two more fibroids they are smaller thank goodness (only 2cm and 4cm) My doctor advised me that if i wanted to plan any further children now would be the time... we had discussed this in earlier sessions so she knew i wanted to plan another child. me and my husband decided yes we wanted to have another child an from then it took until feb 2012 to get my Coil removed as it had been dislodged i eventually had to be put to sleep. It is now July 12 and i am so angry with my body ! i dont know when i ovulate or when AF is due..... it is so frustrating. I am only 29 and i had both my sons by c-section. so already i have had 3 major operations on my tummy. if i get pregnant this time i will have to have another c-section and at same time they plan to do a hysterectomy. sorry this is so long - i have been on web looking for help or advise and i havent found anyone with a similar story.

Cheshire wa7 2dg  [2012-07-12 15:46:28]

Samantha 's story

Confusing decision

I am 36 and was diagnosed with intramural fibroid in 2005, but didnt think too much about it till now. My periods have been irregular since 2003 due to me being diagnosed with polycystic ovaries (normal for me is having one every 6-12 months), but until 2 days ago i was suffering severe labour like pains after being on my heavy period for 4 solid weeks. I went to my GP in tears with the pain who sent me straight to hospital with suspected Apendicitis, after wasting a day in hospital in the wrong ward, being sent home with tramadol and doped up on morphine i went back to the hospital for a scan which confirmed an intramural fibroid measuring 7.7cm x 6.4cm. The gynecologist skimmed through options of various operations that are available, and after looking at various websites the only conclusion i keep coming back to is a full Hysterctomy because of the bleeding that comes with the operations and infections i want to try and avoid multiple operations and if i go for a full hysterctomy, my thinking is the recovery time will be quicker while im younger than going though more bleeding, i am unsure wether i still want another baby but feel this only delays the ultimate anyway, has anyone got any advice as to which way to turn. A full op is such a big step

Birmingham b34 7hs  [2012-07-12 10:58:38]

E 's story

UAE -life changing

I know it may not be the most appropriate procedure for all you fellow sufferers, but UAE worked for me and has changed my quality of life! After years of trips to see GP\'s and even gyaenacologists not once was UAE mentioned to me as an option. I was so fed up of trying pills such as tranaenamic acid and having a coil fitted with no effect. I did my own research, found UAE procedure and demanded I had his done! Not a pleasant procedure by all means as the pain was intense. But 2 months after the op I completed dispelled the full fibroid (it resembled a squashed satsuma) and periods are amazingly light. I no longer need to change super plus tampons every hour, and don\'t use more than regular sized now. Phew. Ever so pleased!

Northumberland NE62 5TW  [2012-07-03 14:43:31]

J 's story

Fibroid diagnosis.

My periods stopped the minute i turned fifty much to my relief.then three years later i started to bleed and then panic,i made an appointment to see my doctor who sent me to the hospital there i saw my gyn,who did an ultrasound and he thought that i had a large fibroid (18 cm)he then sent me for a mri scan and it was confurmed that i had a large fibroid and then he said the words that sent a shiver down my spine and frightened the life out of me he recommended a hysterectomy the mere thought gives me nightmares i would prefer to do the watch /waiting procedure due to my age (54)but i am bleeding everyday since april and have an appointment at the hospital in august which i know he will suggest again a hysterectomy,i feel rether anxious about this already i am always hopeful that the fiboid will shrink given my age but my gyn has told me it won`t.have tried cider vinegar but felt that the vinegar made the bleeding worse.

Norfolk PE32 2HR  [2012-06-28 15:20:45]

Rachel 's story

Rachel

Everywhere I look there are stories of people having heavy bleeding with fibroids. I went to my docs after noticing a large mass (20cm x 10cm) in my abdomen, no other symptoms except needing a wee more often. My doc did an internal and said it felt like a fibroid and has arranged a scan for me which is this week. As I am 37 and have 2 children he has said I will more than likely need a hysterectomy. Has anyone else had the same

Bradford Bd13 2ea  [2012-06-19 13:43:05]

S 's story

Siaks story

I found out about my fibroids 3 years ago luckily by a student doctor as my GP said it was just wind I had 5 fibroids 3 were 10x10cm and 2x 4/5cm inside and outside of my womb. I was worried they said I could struggle getting pregnant. My periods were very heavy as well as pain and they lasted so much longer than before. 2 years later I got pregnant, I couldn't believe it and was so happy!! Although as I went through my pregnancy I started to have more problems my fibroids also multiplied in size so I felt I was carrying 2 babies instead of 1. The problems got worse until at 22weeks I eventually miscarried. After my miscarriage my stomach didn't go down and I still looked pregnant I asked why to find not only have my fibroids got bigger to 15cm I also have more they believe between 10-15. Now I have no choice but to do something about them. Not only are my periods a complete nightmare, I have to deal with people believing I'm still pregnant and me having to lie not to make a situation awkward and I'm constantly fighting to get referrals for my case which now as I can no longer work in my profession due to how I look is slowly sending me into depression.

Welwyn garden city AL8 7AE  [2012-02-29 21:28:50]

S 's story

Myomectomy Decision

I am 36 and have a large fibroid that is over 10cm in length and diameter. Since it has been found, I've been on prostap for 4 months with little success of shrinking the fibroid. Now am scheduled to have a myomectomy in 2 weeks time but my gyn has not performed this operation before and is having another 'more experienced' surgeon in with her. I have no idea to how many myomectomies he has performed but have had to sign my consent letter giving permission for a hysterectomy should something happen. Has anyone had this operation in the Greater Manchester area? Should I be going ahead? Is there anywhere someone would recommend? I just feel that I am making a wrong decision.

Bolton BL2 4HD  [2012-02-27 21:42:08]

K 's story

Fibroids

I am 49 ,I noticed a mass in the lower right side of my stomach which gradually increased in size. I saw my GP in August 2011 who did a pelvic examination, she too could feel the mass.(she descibed the size as a 20 week pregnancy) I had blood tests to measure CA125 levels and to check my kidney function and general health, all of which came back normal. I was sent for a scan a week later. The scan showed very large fibroids.(one the size of a melon) I saw a consultant a few weeks later who informed me the only option for me would be a Hysterectomy because of my age. As my symptoms are not severe I do not wish to pursue this route . My consultant will measure then again in 6 months to see if they have decreased in size, he did mention they are likely to shrink after the menopause. My only symptoms are the urge to pass water expecially when out walking ,occasional constipation and the odd twinge now and then. My periods had always been heavy and left me feeling very drained but they less frequent now so this is no longer a problem for me now.

Luton LU29SR  [2012-02-20 17:46:00]

Michelle 's story

Fibrodes

I have been visiting my gp for over a year with long, heavy, painfull periods. I was given all the blood test and everything was comming back ok. I am 44 and new something was not right clots heavy bleeding and hot sweats every night on my last visit to the gp she refered me to the hospital for a scan my results showed i have about four fibroded about 14mm the size of a marbal, and there is signs of further changes happening i just want a hysterectomny but she said they dont recommend surgery when they are this small i have been diven noriday pill to take every day and we will review in three months i have only just started the pill but am not hopefull when will they decide to operate to remove them it is tuture every month.

Nottingham NG8 3LF  [2012-02-15 21:32:35]

Christine 's story

Coping with flooding and now fibroids

I have had ridiculously heavy periods for the last 20 years resulting in pain and many ruined items of clothing and bedlinen. My lst GP ignored my constant 'heavy periods and very fatigued' symptoms with no tests and no real care. I now have a new GP practice, and diagnoses of ME/CFS and hypothyriodism with my periods totally out of control: heavy 2 week bleeds followed 2 weeks later by a repeat; high pain levels; distended abdomen for years (assumed to be fat by all medics); constipation;constant very sore breasts; a severe aversion to certain foodstuffs (just like in my pregnancies); very regular urge to pee with stress incontinence. I have also recently been diagnosed with fibroids following an ultrasound scan but the doctor didn't feel the location, size or type were relevent to me, simply suggesting mirena or leave well alone and wait the 4 years until menopause. Since depression and sore breasts are common side effects I am taking my time over the decision and have been grateful to find this site. But last year I found a way at last to cope with the flooding and return to a full nights sleep not worried by the inevitable consequences of not getting up regulary to change pads (hourly during the day, each 4-5 hours overnight). Firstly use a Mooncup (http://www.mooncup.co.uk/)You are able to quantify your flow and it has reduced my pain considerably until recently (when everthing was finally bad enough for someone to send me for an ultrasound and identify fibroids). My female GP had never seen one and thought them expensive (£17.00 but sterilised for use every month so way cheaper than all over solutions). Second: I have found a source of maternity/night pads that are giant and really don't leak (http://www.honouryourflow.co.uk/). Yes not what we all wanted to go to bed in but I am now back in white linen and real nightware that I choose, so a result. I can now sleep until the pain wakes me rather than the leaking. I have chossen my materials and colours for day and night so feel that I have way more control over the issue now than I did (and a decent soak in salted water works everytime). NB Book on hypothyriodism by endocrinologist specialist: Very few doctors in general practice are suitably well trainged to identify female hormonal conditions, dismissing them as stress/depression/IBS etc. Seconded. He also states that way too little research is done in this area. My endocrinologist stated that we simply do not yet know the role of many hormones. Great! How then can they understand our issues and help?

Cambridge CB24 5HS  [2012-02-01 21:59:37]

Vali 's story

Cyclogest, and fiboids?

I have for many years sufferd with heavy, debilitating periods which have gradually got worse. They had got to the point were I had to stop work in May 2010, have limited or no holidays or social life because of flooding, abdominal pain and large clots. I really just thought it was what 'women had to put up with' but it got to the point where I was unable to work and even the easiest jobs were impossible if it involved standing sitting or walking and was confined to the house for at least 5 days every month. I was so bloated I looked 4 months pregnant although I new I wasn't and my hair was dry and snapping off in hand fulls. I was initially prescribed Norethisterone but suffered every side effect listed on the web. The following month I was so exhausted and depressed by it all that I went to a second GP who diagnosed severe anaemia I asked for the Merina coil, but on examination she felt a 'mass high up under my ribs' that she thought it might be a pregnancy, I am 48. I was sent for a uterine scan with the view that I may not be suitable for a Merina coil and I was found to have a 9x7cm fibroid at the very top of my womb on a stalk. She sent me to the Gynae consultant at Derby Royal Infirmary who prescribed CYLOGEST pessaries twice a day for 10 days a month. I have Googled 'Cyclogest' and can find nowhere that says it is prescibed for fibroids ....infact it is said it can cause an increase in size of fibroids and is usually prescibed for women who suffer with early miscarriage, actually thickening the womb lining and increasing blood flow. I did however, take it for one month, but I then had a period that lasted 13 weeks. I went to my GP and she was shocked I had been given Cyclogest and prescibed Norethisterone. The two combined made me extremely ill, vomiting, severe headaches, joint pain, hot sweats. I went back to my GP and she suggests not taking any more Cyclogest when my period does appear..(its 3 days late now), but just take the Norethisterone for the ten days. I am not sure what to do I have lost confidence in both my GP and the Consultant. I dont have an appointment with the Gynae now until the end of Feb. Has anyone else ever taken Cylogest for fibroids? Should I take Noristerone alone, which makes me ill?

Derby DE1 2QZ  [2012-01-31 10:13:31]

Dianne 's story

Fibroids & continuous bleeding

Have had heavy periods since early forties. had 2 mirena iud.. 1 good 2nd breakthrough bleeding.. sterilised 7 years ago.. didn't help.. womb ablation.. worked for a while.. now 49 with small fibroids.. backpain and low level bleeding which inhibits sexlife... awaiting another mirena.. would like to know any way to control/ stop bleeding.. any ideas

Morpeth ne61 2tr  [2012-01-23 19:13:01]

Bridgette 's story

Bridgettes story

I have had heavy painful periods with huge clots for a good few years now but had to go to the docs when I was struggling to urinate. She said I had bowel, uterus and bladder prolapse. After seeing specialist and had internal scan was found to have a single fibroid the size of a small melon. Ah so that\'s what\'s been abusing me lower pain, tiredness and cramps. Am now waiting for a full hystorectomy. 3 Mmm is off work ive been told but if It\'s stops me feeling like this I say bring it on. Surgeon seems to think the fibroid is pushing down and causing the prolapses and will hopefully sort that problem out too. Hope so, looking forward to dancing without weeing myself.

Hull hu17 0qg  [2012-01-14 17:29:58]

N 's story

Fibroids, Heavy, Painful periods and Blood Transfusions

I'm 43 and have suffered from fibroids for over 10 years. Heavy Periods (changing tampon every 10 mins). Flooding in supermarkets, hairdressers etc. Not being able to go out on day 2 and 3. Pain. Sleepless nights. Finally,now, after my second blood transfusion (due to excessive loss of blood), i've decided to do something about it. The largest fibroid I have is now the size of a five month pregnancy. I'm on norethisterone tablets, 3 per day and bleeding heavily. I am awaiting an appointment for a Uterine Embolization.

Birmingham B20 1EF  [2012-01-11 16:28:30]

Chrissa 's story

Blooming cheek

Had four weeks off work to recover from UAE felt more poorly than expected as huge fibroids. Now given a written warning from work due to absence over 21 days. Explained a further op for myomectomy will be required but told by employer that if I have any more time off in the next six months I will be in second stage of absence policy one step away from dismissal. how can I be so penalised for having a womb? Disgusted

Hampshire PO14 3SW  [2011-12-15 16:42:47]

Julie 's story

Invaded!

I was diagnosed with a fibroid the size of a grapefruit when I was 36 (about 17 years ago). I'd always had heavy periods and my mysoginistic GP had told me to just live with them. the Fibroid was found during a routine check up by the FPA doctor- and she told me to go and kick up a fuss and get it checked out by a gynae. One weekend the periods were so heavy I thought I was going to die- huge clots- and my haemoglobin was desperately low. GP warned me I'd end up with a total hysterectomy, but the gynae consultants did a myomectomy and advised me to try for a baby before I hit 40. I wasn't in a relationship at the time with a partneer who wanted children- so it never happened. However my periods became a bit more like normal- and they eventually petered out by the time I hit 50. However, I've had spotting- and the odd period and I gather the buggers are back. Why oh why has treatment not moved further forward over the past 20 years- this is a very common problem- but because its a female complaint no-one seems too bothered about it- apart from us!

Wick KW1 5TF  [2011-12-08 18:34:34]

A 's story

7cm fibroid

For several years now I have had problems with my monthly cycle from irregular to heavy bleeding. Recently I have noticed a pressure on my bladder and bowel, have developed a pain in my back which shoots down my thigh (only when I have my period) and i have started to pass clots. Last month I bled very heavily for the first 36 hours and then my period stopped. a few hours later I was in excrutiating \'labour\' like pains which lasted for around 30minutes and then I started to bleed with bigger clots. this repeated itself 5 times over the next 4 days. my husband took me to A and E during one episode of pain but by the time a gyneacologist came to see me the pain had stopped. He was very patronising, basically saying that sometimes periods are painful and heavy etc etc and that it was because I \'had a calorie intake problem\' and I should just get a coil fitted. I managed to convince him I should at least get an ultrasound done which I did get 2 weeks later. At the ultrasound I was told I had 3 fibroids, 1 of which was 7cm. I was also told that this was not very big and it shouldnt be causing me problems. Well here I am period time again and I seriously cannot cope. The bleeding and the pain are ruining my life. I am a high school teacher and I am struggling to cope with the demands of my job and with my 3 children. I want something done about this but I am not sure what can or should be done, and feel so desperate that actually i would be quite happy to be wheeled in to surgery tomorrow for a hysterectomy.

Inverness IV3 7LE  [2011-11-18 22:41:09]

M 's story

Bladder pain

I have been having bladder problems for 10 yrs and keep being treated for cystitus which i know it isnt i have recently had a scan which has shown cysts on my cervix and a large fibriod they now think the pressure is the cause of my bladder pain i feel like i am bursting to pass urine all the time and when i go there is usually a tiny drop with a lot of pain like a pushing pain when i explain this to doctors they look at me as if im mad, since i had the camera inserted the pain is constant and i am unable to work or go out for more than 20 minutes its ruining my life seems no one understands i have just been referred to hospital but its the same doctor i saw 10 yrs ago so dont hold out much hope.

Tamworth b78 3nj  [2011-11-17 16:25:28]

Angela 's story

Light at the end of the tunnel !!

I am writing my story in the hope that it may help one or two ladies out there with dilemas involving fibroids. I am 50 years old and discovered I had fibroids one year ago after suffering from the usual symptoms horrendous bleeding bloating,etc. After scans I was told I had 5 fibroids and needed a hysterectomy - I asked many questions and looked at as many websites as I could find including this one eventually opting for an Embolisation procedure at the Northern General in Sheffield - I was in hospital just one night, the staff were excellent although the actual procedure was very painful, you are back home the following day and after 5 days or so feel great, bloating starts to go after a couple of weeks and now 7 months on have no symptoms of fibroids at all. Would I recommend this procedure? MOST CERTAINLEY ! It is worth asking about embolisation if it doesn't work you can always have a hysterectomy at a later date.

Sheffield de45 1sg  [2011-11-07 12:17:41]

D 's story

Donna, Newcastle Emlyn

2007 started needing to urinate more frequently and felt bloated. 2009 routine examination at doctors revealed blood in urine. Referred to Urologist and an ultrasound revealed fibroid 5.5cm. As I was 47 they felt that possibly it would shrink with onset of menopause. After about a year I had difficulty urinating especially in the morning and it got to the point where I simply could not without getting in a warm bath! I also could not empty my bowel fully. I don't like hospitals so put up with it and it passed. The last few months I noticed my stomach getting bigger and I was starting to urinate very frequently. I went to my GP and he said my uterus was size of 20 week pregnancy and sent me to hospital to be checked on Gyne ward. 2 doctors did internals and said I could stay in if pain was bad - ran for door at that point! Had to go back three days later for another ultrasound - large fibroid confimed but they could not see my ovaries because of the size of it (they also tried to see ovaries by doing a vaginal ultrasound). I also could not have a smear because they could not get to my cervix. Three days after this I began to feel really unwell, very bad abdominal pain, stopped eating felt like I was in labour. Ended up at A & E where large amounts of blood in urine were found, high white blood cells(suggesting infection) and abdominal x-ray showed large fibroid pressing on intestine and severe constipation. Dr advised me to contact consultant first thing on the Monday and arrange to get it removed as it was too big. Hospital were great and asked me to come to Gyne ward and have an injection to shrink fibroid prior to surgery. I don't care about the hot flushes and sweating as the side effect because I now realise just how bad that fibroid has been making me feel - they are insidious and you sort of get used to them. Now it has shrunk I sleep at night because I do not constantly need the toilet. I can empty my bowels properly and my stomach does not look 5 months pregnant. This is a temporary measure and sadly I have been advised to have a abdominal hysterectomy which is scheduled for four weeks time. I am scared but need my life back so am forcing myself to be brave. Will let you know how I get on.

Newcastle Emlyn SA38 9NJ  [2011-11-01 21:24:15]

Nicola 's story

Fibroids or not so worried

Im not even sure i have them yet, but im thinking so many bad things , that ive got myself in a right state, i started my period, 4 weeks ago, and it just didnt stop, and now my next period is probably here, although i wouldnt know, i have been to a and e, as the low cramping was awful, and the dr seems to think they are, she gave me an internal , but didnt feel anything, the pains are horrible, and only stop when i take painkillers, i have a scan nxt week i suppose i will know then, but people i have spoken to who have fibroids, said they didnt bleed continuesly, that it stops and starts.... any advice would put my mind at rest thankyou, im 42yrs old, have 4 children, and have the old copper coil , which dr said was still in place.thanks.

Bradford BD3 7AP  [2011-10-25 20:49:19]

C 's story

Miss Claire Slade

I noticed I had fibroids back in May this year when I started to get a bloated stomach and heavy painful periods. I fainted in a public place which was rather embarrassing but it made me realise that I had to do something. I went to see my GP and he seemed very concerned and baffled by the size of my stomach and referred me to the Gynaecology department at my local hospital. They kept me in as I had a fever and my blood levels were all over the place I had an emergency scan and it was discovered that I had a very large fibroid growing outside my utreus and the only option that my consultant decided was a myomectomy which was to be carried out 4 months later. I was given Zoladex injections for 3 months before the operation which did help my symptoms and two weeks ago I successfully had the operation and my uterus is preserved (there was a risk that a hysterectomy had to be performed but that was not the case). I was told after the operation that my fibroid weighed 3 kilos it really felt like I was carrying a baby around inside me. I was discharged 3 days later and I am recovering well at home and the pain after the operation was bearable. I am very greatful to my consultant Miss Shah and her team for carrying out a successful operation and I am very lucky that I will be able to hopefully have children in the future. I am also glad that I dont have to be mistaken for being pregnant all the time as I found that embarrasing to live with. I am now very optimistic for the future and begin a new life. I hope a lot of women will experience the excellent health care I received from the Gynaecology team at my Local Hospital. C.S. London

London E6 1AB  [2011-10-11 12:07:33]

Jackie 's story

My story so far.

Have been diagnosed with fibroids two years ago. Was having heavy bleeding and passing large blood clot. Went to see my gp, woman doctor , who told me that this is very common for women my age to have, heavy bleeding. I was 43 at that time, the gp never offer me to have any further test, or gave me any treatment, I was casually dismissed and sent home. I went back two months latter again suffering from heavy bleeding and stomach pain. I was seen by a new qualified doctor who arranged for me to have a scan, I was then diagnosed as having fibroids. I have two small one and a large one. Went back to my gp who prescribed mefanic accident and tranexamic acid to stop the heavy bleeding. Mefanic acid gave me very bad heart burn, diarheao, nausea and I could not take them. I went back go my gp to complained about the sever side effects I was having, she then prescribed me another tablets to eased of the heart burn and indigestion. Tranexamic worked, but it supposed to stop the bleeding after four days, and it should not be taken more than four days. My period always lasted like 15 days and the bleeding got heavier and heavier each month, I was at that point passing out large blood clots, I was feeling tired because I was lossing so much blood., and was anaemic as well. Went back to the doctor again, and she put me on more tablets, this time contraceptive,which makes the bleeding worse, and carried on from one month to another for three months. I went back to my doctor, and again imwas Forbes of with more tablets. She said I will up your dose, instead of taking one tablet , takes two my god that make is worse, I am now forty five years old, and the only solution the doctor told me that I have to live with it until my menopause, when the fibroids will start shrinking on their own. Imagine living like this, heavy bleeding, no sex life at all, to scared to go out, blood sipping through your close at work, what a terrible way to live. Oh and by the way I have been told by my doctor, that treatment and surgery for fibroids on the nhs is not classified as important and has been put at the bottom of the list, I have asked to see a gynae and have been told that it is not important as there is nothing they can offer me. I work three jobs, paid tax three times, paid national issuance three times and have been told I cannot be treated on the nhs, as fibroids is not life threatening enough.NGOs sad in this day and age to be treated like that in the uk. I think the goverment should rethink their policy about life threatening illness, How come obese people can have gastric by pass on the nhs? Why we women who has a condition through no fault ofp ours cannot have treatment for our condition. Breast augmentation is being offers on the nhs because someone is not happy with the way they look. I am calling on all pcts in every part of the uk. Please reconsider your opinion on fibroids, we need more research, more sympathy from our gp, and treatment should be made available, and we women surferes should be given more choices into making our own decision. I am hoping that my story will be read and listen to. Thank you. Keep on fighting for our health.

Oxford Ox14 1lz  [2011-10-07 21:07:48]

S 's story

SB

I had a myomectomy 5 days and this is my first day back home post op. I am 31 years old and have put off having a myomectomy for around 8 months now due to various things that have happened this year (including loosing my mum to cancer in March). I started getting fibroids around 3 years ago and initially they were ignored by my local GP. I had my first scan which revealed a few fibroids but I was informed they were not a cause for concern as we all had them and I just had to monitor them. 6 months on I felt my stomach getting bigger and harder and my peroids were becoming iregular ( not heavier), I arranged for another scan and was told the fibroids had grown but again was told not to worry about them. As months went on I felt my stomach get bigger and bigger to the point where people would ask me if I was pregnant and people would start offering me seats on the train. It did nothing for my self esteem and found myself having to buy a whole new wardrobe as I was unable to fit into my usual size 10 tops and found myself opting for size 12-14 long unflattering flowy tops to hide my belly. 6 gym sessions a week did nothing apart from my slim my legs and my backside but instead made my belly look worse!! As time went on I became a recluse and would avoid going out clubbing as the thought of what to wear would make me feel sick. The only people I could really confide in was my sister and my mother as they could see what this was doing to me. After a few months I again went back to my gym who refered me for another scan but this time I was adament to have it at St Mary's hospital as I had heard very good things about their gynochology department. Even though I had to wait 8 weeks for a scan and had to start from scatch it was worth the wait. For the first time I was seen my someone who had knowledge about fibroids and was able to reconfirm my suspicions that mine were unusually big and casuing me a lot of discomfort. After 2 weeks I was seen again for another scan then a post scan appt was made soon after. I was seen by a very pleasant man called My Miskry who gave me a detailed account of the size and length of my fibroids and the options I had available to me. He told me that key hole surgery would not be an option given the size of them and a myomectomy would the only option to preserve my uterus. I never felt rushed my him I was able to email any concerns/queries I had to the department and would always get a responce within 48 hrs. After a few more appointments I booked myself in for an open myomectomy in Feb but unfortunatly due to my mothers untimely death to cancer I rescheduled for May, I didnt feel ready so eventually postponed the surgery for September which I felt prepared for. I waa given tonnes of paperwork about the op and didnt feel I went in unprepared. 4 months prior to the op I was taking hormonal injections once a month which stopped my periods and held shrink my fibroids down considerably.The doctors said this would help the blood loss during surgery. The plus side of the injections were my stomach had shrunk and the bloated preganant effect had gone, the downside was the hot flushes left me feeling like I was living in a sauna!! and sometimes I would get really irritable. The night befeore the op I did feel a bit nervous but I had a huge network of support from mates, family and colleagues. I had to fast by midnight and my op was at 730am ( even though it didnt end up taking place till 930) It was a 2 hr operation and I was knocked out by the GA within 2 minutes. Before the op I had to remove all my piercings and remove all my nail varnish. I ended up coming round at around midday and and was allowed visitors from 3. The first day I was pretty much out of it and spent all day sleeping and contantly pressing the morphone drip attached to me. The following morning I felt horribly nauseous after taking a shower. Tbe worse part was I hadnt eaten in in over 35 hours so was starving but they wouldnt give me anything other than water until the doctor had seen my post op to make sure my intestines etc were working okay. Eventually they gave me a bowl of soup and some sugary tea and felt so much better. Later that day they removed my cathetar and soon after removing it I was able to return to weeing normally. They also gave me some laxatives the next day and was able to open my bowels within half hr. (The painkillers and morphine will leave you feeling constipated so it will help move things along)I was also given iron tablets as many fibroid sufferers will be anaemic.( Even though this will leave your poo very black) Day 4 ( 4 days after the op)I was seen my the doc and was told I was ready to go home. He informed me they removed a total of 2 kilos worth of fibroids ( 17 in total!) and I lost 2 pints of blood. The consultant said he was not at all surprised how uncomfortable I had felt carrying this weight over the last few years. I was supposed to go home day 3 but just didnt feel physically ready and the doctors and nurses never at any stage urged me to go home unless I felt ready. Before going home I was given all my painkillers, iron tablets,a stapler remover for my stitches, a medical certificate for my boss and some aftercare paperwork. I am due to have my stiched removed this week by my local nurse( day 7) and have been told to take a painkiller prior to having them removed. All in all I am so relieved to have the op over and done with so I can finally look forward in my life. Its amazing to feel a softer stomach for once even though it doesnt look totally washboard yet ( but I have been told this will take time). No regrets so far!! Hope this helps anyone who having doubts about the op or wants more info. Good Luck xx

London HA62BQ  [2011-10-04 20:30:44]

Gina 's story

Gina ,scotland

I got diagnosed with a large mass went for a scanfound out I had a very large fibroid measuring 15in by 7 in by 7in,then went to see specialist who says the way its positioned its too dangerous to operate on so I am now gettin injections to reduce the size hopefullybut won't get operated on for 4 months and that they will also do a sub-total hysterectomy in the mean time I cant sleep due to the pain and discomfort just fed up .

Cowdenbeath ky4 9pa  [2011-09-25 02:53:05]

S 's story

Fibroids

My probs started 10 yrs ago when i was diagnosed with a molar pregnancy, 18 months down the line i was sterelized. During the months after my op my periods gradually got worse and worse very painful and flooding every month. 5 and half yrs ago i had the merina coil fitted to stop my periods which didnt happen but did make them alot lighter and mangeable. In August this year i went for my routine smear test (which came back normal)whilst i was having the smear i asked the nurse how long the coil had been fitted and she told me it should of been changed 6 months ago but because i wasnt using the coil has a contraceptive it wasnt a problem but would have to see my doctor to get it changed. so i made app and went to see doc, she gave me an internal and said i had a mass in my uterus and need a ultrasound scan to detect fibroids before she could change the coil. last week i went for the scan 2 days later my doctor rang me at home saying the ultasound was inconclusive and i would after have a MRI scan. To me a MRI scan says cancer cancer cancer, plz advise im going out of my mind with worry. many thanks x

Wakefield wf1 2pe  [2011-09-23 22:58:50]

Sally 's story

Ms

Hi, I'm 40 years old and after 3 years of the most nasty and flooding periods I have finally been given the chance to have a hysterectomy due to my very large and annoying fibroids. I have bladder weakness due to the pressure, and this also effects my bowl, which can result in terrible stomach/gas pains that can reduce me to tears. I am on the pill, which i take three months at a time. After my period i am having a foul smelling discharge for about two weeks. I have searched the internet and am struggling to find anyone that it also suffering from this....Surely I can't be the only one?

Surrey SM5 1HJ  [2011-09-02 19:37:49]

Crispy 's story

Crispy

Waiting for UAE one huge fibroid one medium and at least two smalls. Had MRI and 3 ultrasounds. Very worried about pain after the procedure. Will let you know how I get on. Relieved after 20 years of being asked when is the baby due that I might get a smaller stomach.

Hampshire Po143sw  [2011-08-28 16:03:32]

J 's story

Fibroid problems

I am 53 and had a myomectomy 15 years to remove five large fibroids which had grown during my pregnancy to 11cm. Now I am perimenopausal and have another 5cm fibroid and have suffered from irregular heavy bleeding and flooding for three years. After investigations I was given Zoladex but this has not helped. It seems I suffer with oestrogen dominance which causes the lining of the womb to grow and sudden bleeding. Having tried the non-hormonal and hormonal medical therapies (I am currently taking Norethisterone 15mg per day, I have now asked for a hysterectomy as I want the problems to be permanently resolved. I am now waiting for a date for the operation after which I am looking forward to a new life!!

Surrey GU10 4ND  [2011-08-25 16:42:33]

P 's story

Mrs

I have a 18.5 cm fibroid and had UAE seven weeks ago. I have gone back to the hospital today as pain has returned and awful night sweats. Fibroid hasnt shrunk at all. I wondered if I am being impatient, can it take a while for the fibroid to shrink?

Preston Pr 1 0 ls  [2011-08-24 17:40:38]

Rachel 's story

Rachy29

After a 12 day bleed with many fist size clots i felt something coming out of me....called my gp who said it sounded like a prolapse of my womb,after seeing the gp mins later she said there was an 8 cm mass thought to be a miscarage half in and half out of my cervix.I got sent steaight to the hospital where examined again and found out the mass is a fibroid.sent home bleeding very heavy and told i will be called soon for emergency surgery.As i have an 18 month old this will not be easy to sort out :( Very frightened :(

Carterton ox18 1hf  [2011-08-24 03:38:56]

R 's story

Fibroid what will be my treatment

Hi i have a fibroid 6.3 x 7.6 x 5.7 i have a hospital appointment october .the doctor has told me it in the inside muscle of the womb it is distorting the womb lining.i am 39 with 2 children and wouldnt want anymore children ...please can anyone tell me what will happen ,i have painfull periods with bloodclots and have had the depro injection to help stop this ..any help would be appreciated thanks xxx

Shropshire tf2 0dw  [2011-08-15 13:32:59]

S 's story

There are Alternative Treatment Options

Great to find this site, however, yet again, I am frustrated at the narrow range of treatment options suggested, and the very fixed focus on conventional western medicine, when there are other options available which women repeatedly report they find help them. I have very large fibroids, and have had them for many years. It all started following a period of extreme stress, and over the years it has been clear that for me, this has been the root cause - I've had a bit of a decade, in fact ! I initially ignored the problems, and just became more and more weak and felt incompetent. After about 3 / 4 years (in late 2006), I finally got diagnosed, and then set about educating myself about fibroids. Certainly for me, and many women, the fibroids are simply the symptom arising from other factors. So simply cutting them out does not address the root causes. I am now following a programme of treatment and actions which aim to redress my system imbalances, as well as reduce heavy bleeding and the size of fibroids. This includes a combination of acupuncture, herbs, diet, yoga, and supplements. I have come to this point after deepening my understanding of my condition, and learning from what was working / what wasn't working for me. I have gone to expert therapists, who have a deep understanding of hormones and gynaecological conditions, and good medical understanding too - not simply blindly following any "miracle cures" but properly assessing them first. The yoga I am following now is based on a book by Bobby Clennell, called "Women's Yoga" - specifically to calm my system, and for heavy bleeding and fibroids. Diet is basically avoiding red meat, dairy, soya, gluten - and trying to include a lot of leafy greens / brassicas, raw food, juices and green smoothies (with fruit as well so they taste good!) - a liver friendly diet. But I am practical and realistic about all this too - so I don't beat myself up any more when I fail to be perfect in following all this. My energy levels and ability to function are completely transformed, and I feel "normal" once more after so many years. I've never really had pain, as I've always practised yoga through my fibroids, but diet helps too (gluten was causing discomfort). Over the years I have seen and felt a reduction in the size of my fibroids and bleeding (e.g. following Chinese herbal treatment, and detox programmes), including discharge of fibroids - but these were not sustained when I had further periods of stress, so the fibroids re-grew. That is why my current programme of action is much better, as it is addressing the whole system, and management of stress. I have been seeing and feeling a noticeable reduction in size and softness of my fibroids (and associated side symptoms e.g. pressure on bladder etc.) over the last 6 months since I started my new herbal and yoga programme. Recently, I have also finally written a record of my fibroid history, the symptoms and actions, and my herbal treatment history. I intended to do this for such a long time, but it felt like such a big task - but now, I found it easy to just get it out. I also have produced a systems diagram showing what is going on with me, and written some poetry (of sorts - I'm not a poet!) about different aspects of it - frustrated mostly by other people, their attitudes, and their belief that they know better than me what action I should take. Finally - this may seem too alternative for the conventional medical practitioners and followers on here. But let me ask this - when we women are diagnosed with fibroids, would it really be very alternative to suggest lifestyle and dietary changes to avoid further fibroid growth ? E.g. plastics, red meat, dairy, soya ?

Sheffield S1  [2011-07-30 10:53:02]

J 's story

I am dealing with fibroids head on

I was first diagnosed with fibroids in March 2011, their presence confirmed by ultrasound and MRI exams. After seeking the opinion of 3 OB/GYNs in my area, I have decided to have an abdominal myomectomy to remove the larger fibroid (10cm as of a few months ago). I would strongly encourage women to always ask a lot of questions at the doctor's office, stay informed, and always seek a 2nd opinion if you are not comfortable with your doctor or their approach. I have lived with a number of unpleasant fibroid- related symptoms which interrupt my daily life - long, heavy and painful periods, irregular bleeding, random pelvic pain, a swollen abdomen... I am looking forward to putting all this behind me! I am a British woman dealing with this issue in the United States, where I recently relocated. I have started a blog of my fibroid story here: www.whenfibroidsattack.wordpress.com

Washington DC 20005  [2011-07-26 18:33:43]

S 's story

Miss

About a year ago I noticed my abdomen had become quite distended and and hard. I also suffered from constipation and occasional lower abdominal pain. I saw my GP for another unrelated issue and mentioned the problem after thorough examination and worried look and she referred to a Gastroenterologist who was quite baffled. I had a CT scan which found to have multiple fibroids the biggest 3 measured 18cm, 16cm and 14 cm in diameter. I was referred to a brilliant gynaecologist Mr Phillips and after 6 Prostap injections I had an open myomectomy 2 weeks ago as the fibroids were still too big for keyhole. He removed the biggest 3 and about 7 other small ones, my womb was the size of 28 weeks pregnancy. I am recovering really well, I was discharged 24 hours post op. I have been able to do most things in the house. The pain was bearable, I stopped taking the pain killers about 3 days post op. I am very pleased with the scar as well and the weight loss.

Durham dh1 4gd  [2011-07-20 16:45:45]

Janet 's story

Janet

I have 2 large fibroids which cause heavy periods. After years of seeing various Consultants and GPs I still feel I don\'t understand what options are available to me other than hysterectomy. Consultants don\'t explain what options are available and seem keen to send you on your way. Has anyone heard of SERRACOR a fibrin dissolving enzyme in use in USA or any similar treatment? I feel that I should have been given treatment when the fibroids were small instead of being left for them to become much larger, they will continue to grow until menopause in 5 or 6 yrs. I was told by the last GP I saw that the fibroids will shrink to a negligable size at menopause but I admit to being unsure if this is true.

Sheffield s20 4ua  [2011-07-14 12:18:07]

SM 's story

Lower back pain

I was diagnosed with an 8cm fibroid at the back of my uterus 4 years ago, last year my scan showed it had grown to over 12cm. Mostly I have no pain but ocassionally suffer a dull pain/feeling of discomfort in my lower back- especially when sitting in a car or moving my right leg. This can last for several days/weeks then I could go for a preiod of time with no symptoms at all. I am 33 and have no children but would like them in the future. My GP/specialist has said that I can do nothing or go with UAE or myomecomy. I am not sure what to do. How can I tell it the lower back pain I get is related to the fibroid? Is it worth seeking a second opinion from a private doctor?

Glasgow G12 9QZ  [2011-07-13 23:10:43]

Angela 's story

I Want my life back,,,,,,

What can I say about fibroids in one word...Nightmare! My own experience of having fibroids and how its affecting my day to day routine. I have numerous fibroids and one measures at 14cm. Due to the size it is putting pressure on my kidney on the right hand side of my body this pain is becoming daily more so due to the size,and I also suffer lower back pain. My stomach has swollen so much I look pregnant and its so disheartening to see my body change like this over the months, it has knocked my confidence and self esteem, I hardly go out because I have zero energy most days, I sleep a lot! always running to the toilet and having trouble passing. I control my period by being on the pill and when I finish I will stop for five days and go back on them just so I dont have to bleed, plus I have an implant inserted in my upper arm. There is a light at the end of the tunnel though, I meet my consultant on the 19th of July, to discuss the UEI procedure which I am opting for. I just hope this works for me and I can get my life back. If anyone reads this and is familiar with my symptoms but has done nothing about it then perhaps you need to see your GP and request an ultra scan and if the condition is really bad they will refer you for an MRSI scan. I feel for all you ladies out there who is suffering the same....This has been a very helpful site, it has made me feel a bit better knowing I am not the only one who is going through this....

Inverness IV2 3LJ  [2011-07-12 00:15:33]

F 's story

Getting past GPs and pain control

Hi, my daughter had an emergency myomectomy aged 16 years because of severe breathing problems as it was so huge and attached to her bowel wall. She has recently had embolisation aged 19 years. Both times we couldn't get a GP to take out concerns seriously and were told the second time that only older women get fibroids. Pain control is very poor at the QMC and both times my daughter was discharged with zero pain relief, requiring accessing emergency out-of-hours services. I now keep a supply of strong pain relief at home all the time just in case. Why are women treated so poorly? Fibroids are serious.

Matlock DE4 4FD  [2011-07-02 17:54:59]

Debbie 's story

Very confused.

Hi Everyone, I had an endometrial ablation 3yrs ago. Having had some excruciating pain I was sent for an ultrasound scan that showed a 2.5cm mass in my uterus. A recent visit to a gynaecologist said that he wanted to remove it urgently (appt to surgery in 4 weeks). He seemed to think that you cannot get fibroids after an ablation but my hospital notes say that I am going in to have a fibroid asection. Has anybody else grown fibroids after ablation and how quickly do they grow? Any help would be really appreciated as this has left me very confused and worried. When do the NHS ever work that fast???

LANCING BN15 9DJ  [2011-06-23 13:55:06]

Anne 's story

Myomectomy and more

I just wanted to share my daughters story she is in hospital again as I write this she had a myomectomy at 19/20 years of age due to an extremely large fibroid - she had large blood clots a blood transfusion and very heavy periods this was her only choice. However she recovered really well and tried to get back to normal life but heavy periods returned blood clots and yet another fibroid returned. She did lose weight which definately helped and stopped eating red meat well tried!!! However the fibroid has got worse but unfortunately a blood clot had formed near the fibroid so she has been in agonising pain she is now 26!! Fed up with it yes in and out of hospital - they cannot remove this fibroid without a full hystorectomy so thats not a choice at the moment - they are going to deal with pain relief for her so we are hopeful for the time being until she starts a family, She did suffer two miscarriages last year and her relationship ended. However things are looking up she has a brillant consultant on the NHS so I do think thats has helped She knows the clock is ticking for children but we will cross that bridge - leading a healthy life is more important at the moment..

Bromley br2 7ar  [2011-06-22 11:07:36]

Bridget 's story

Living with fibroids

I was diagnosed with multiple fibroids a year and a half ago, and later told that I also had a large endometrial cyst on my right ovary. I am now 44, never had children, but have always wanted them, but not been in a relationship at the right time to try. I have been with my partner now for 4 years and we had tried for over a year to get pregnant (knowing it was a long shot), it is only through fertility checks and mentioning the pain I had been having on my right side that the fibroids were detected. The first consultant I saw had no bedside manner, was very unsympathetic and said hysterectomy was the best treatment. I was referred to a specialist, who explained that if the aim was to retain fertility a myomectomy was the best option, he was much better at explaining the condition and treatment and both myself and my partner felt we trusted his opinion. I was told to go away and decide. After reading up on fibroids on the internet we decided on the myomectomy. I phoned to confirm my choice and then heard nothing for some months. I then got a letter to see another consultant, just before Christmas. Apparently my case had been discussed by all the team and it was recommended that a myomectomy was not my best option, the risks outweighed any benefits I might gain, and if symptoms were manageable, I should go home and carry on as normal. I went away feeling very confused and upset. I always knew that my chances of having children was very low and now non-existent, which I have to come to terms with, but I am quite shocked at the lack of understanding and sympathetic approach shown by some of the male consultants to a condition that is not just physically hard but psychologically hard to endure. I felt very much a powerless victim, so I decided to read up more on fibroids and alternative treatments. I changed my diet, increased exercise & lost 3/4 stone in weight, and started having acupuncture. At this point my periods were very heavy and lasting two weeks, and I felt very tired & depressed. I was amazed at how much better I felt after the first two treatments, maybe it was partly a placebo effect, I don\'t know, but my cycle went back to normal, my night sweats decreased in intensity, my energy levels increased and I felt really good. However last month I started to get pains in my lower abdomen, and I could feel a large lump on my right side, I needed to pee every half hour and had a constant feeling of a full bladder. Ultrasound checks showed that the cyst had doubled in size, was now size of a small grapefruit and pressing on my bladder. Coupled with that my period was 10 days late (pregnancy test was negative), which has never happened to me before. Despite this, if any other women read this, and are looking for other treatment options I would recommend acupuncture wholeheartedly, and feel very strongly that it should be offered on NHS to ease symptoms of fibroids, PMS, menopause as a matter of course. Being told to just go home and carry on as normal is not an option! The consultants now say that surgical intervention is needed, my options are myomectomy or hysterectomy and they have made it clear to me that their preferred option is the later! I would love to hear from others in the same situation as me, I cannot contemplate a hysterectomy, it just feels so wrong, but I have also read some negative stories about myomectomy too. Part of me wishes I had pushed to have the myomectomy back at Christmas, when the csyt was half the size it is now. I know I have to make a decision soon, but at the moment I just feel like putting my head in the sand & hope it will all go away.

Thetford Ip26 4DR  [2011-06-20 13:06:37]

Amy 's story

Myomectomy

Im 29 years old and been married for nearly two years. We are trying to conceive and a friend suggest to see gynaecologist to see if everything is ok. I saw a lovely gynaecologist who did fertility checks and also ultrasound. Unfortunately she found 1 6cm fibroid anterior. She suggested for me to have laparotomy myomectomy to remove it. I dont have problems with my periods, maybe feeling some 'pressure' on my bladder. She said the surgery will be beneficial because fibroids can affect fertility and if i fall pregnant it reduces complicatioms caused by fibroid. Im thinking to leave it for maybe another 6 months to see if i can eventually fall pregnant without having surgery but im scared about the complications that the fibroid can cause if i dont remove it. Im a nurse but still is not clear of what to do!! I'll be seeing the surgeon in 2weeks time to talk about the surgery and i will ask her this question.

Shropshire 2ww 5bg  [2011-05-28 03:42:58]

Lynn 's story

Lynn 32 scotland

Hiya everyone i am lynn 32 just today i had a scan and was told i have fibroids i have been getting very bad periods and bleeding and spot bleeding out with my period , i have been trying to get pregnant for 4 years not sure if fibroids have stopped this from happening. i am lucky i do have a son he is 8.I am not sure when i go to the doctors what they will say and will fibroids keep growing from lynn

Scotland ab43 6nj  [2011-05-17 19:29:12]

Rachael 's story

UAE, myomectomy, the lot!

When I was 28 I was diagnosed with fibroids. I didn't want intensive surgery at that time so opted for UAE. I don't think the treatment was successful. About 6 months after, I had the worst bleed I've ever had. Since then, I have not noticed significantly less bleeding than before the treatment. I still get leaks - usually at night but sometimes even during the day, although I change tampons and towels every 60-90 mins for the first 2 days of my period. I'm now 38, and I've been trying to get pregnant for the last 3 years, unsuccessfully. the fibroids had grown back, mirroring a 16 week pregnancy, and distorting my uterus. the Gynaecologist said that a myomectomy was the only way forward, and I would have to have this before IVF could practically be considered. So, three operations later (diagnostic laparoscopy, hysteroscopic removal of internal fibroid and abdominal myomectomy of external fibroids, plus ovarian drilling at the same time). I'm now recovering very slowly from the myomectory, which was a month ago, but the wound still hasn't healed properly yet. My main concern now is that even though it'e been 2 months since my last prostap injection (I had to have 4 before the myomectomy, to shrink my fibroids), my periods haven't returned and I'm still having hot flushes! I hope to start IVF as soon as possible. Does anyone know when my periods are likely to return, and if there's anything I can do?

Gloucester GL1 3HZ  [2011-04-15 16:00:50]

Thelma 's story

GP-training

Around October or November 2009, I had an appointment with my where I complained of migraine, severe period pain, heavy bleeding with clots. The GP referred me to St. Mary’s hospital where I had a scan done and was informed that I had a pendulated 7 cm fibroid. The GP asked if I wanted it removed and I informed him that I was unsure as my husband and I were trying to conceive. His advice was to try to conceive and if the symptoms become worse or I cannot conceive to come back. My next appointment was with another GP at the same practise. I informed him again that I was having heavy bleeding and quite bad stomach pain. He asked me where the pain was and I pointed to my lower stomach. He looked at me and quickly informed me that I have IBS. I asked him that if the fibroid might be the cause of all those symptoms and his answer was that with fibroid the best thing was to leave it alone and to exercise and go on a diet. I am 5’2 and weighed around 51 kg around this time. I was so angry that he dismissed me and without sending me for tests just diagnosed IBS with no treatment or solution for the pain and other symptoms. I called the surgery and complained to the Practise Manager and asked that I do not see this doctor again. My next appointments after that were with another GP at the same practise. I once again went there for mainly the same symptoms and the fact that by late 2010 my husband and I were still unable to conceive. Each time I mentioned the fibroid and the fact that I am also going regularly to the toilet, I was dismissed and was told that fibroids do not affect fertility, I might not be conceiving because of my age etc… I also informed him that I was having such heavy bleeding and pain that it was affecting my life style and that I was wary of going out during my period because of the bleeding plus the fact that I have to be aware of where the toilets were because of my weak bladder. By December I got so fed up of the same answers that I requested that he sends me for some fertility tests. His response was that we normally do the tests with the men first as it is cheaper but he can send me for a blood test. He then proceeds to print a form for my husband to have a sperm test done. I argued with him, saying that I was the one here and not my husband and I wanted some tests done. He refused and told me to speak to the nurse for some blood tests. By end of December, I found out that I was pregnant. My husband and I were overjoyed but I lost the baby in January 2011. At St. Mary’s hospital they did a scan and told me that they are going to ask my GP to refer me to a gynaecologist as the fibroid has now grown to approximately 9 cm. The nurse even told that if my GP did not recommend me, I should change my surgery. The hospital did send the result of the scan to the surgery but no one called to inform me of it. I was extremely upset and went straight from work and demanded to see the practise manager. I complained about the GPs and was told that he will set another appointment for me with another GP in 2 weeks time. The practise manager also informed me that he could not do anything about my complaints and I have to put everything in writing in order for him to investigate. I did not do so because as a result of the discussion, his reaction (So what do you want me to do about this?) plus the fact that he gave me an appointment in 2 weeks time, despite the fact that he could see that I was extremely upset (since I was crying non-stop). I did not have any trust or faith that he was going to do anything about these issues. Despite my tears and complaints that I wanted to see someone earlier, I subsequently saw another GP (again at the same practise) 2 weeks later for a double appointment. The GP then referred me to an NHS gynaecologist. I had the appointment at the beginning of March 2011 and was seen by a junior doctor who informed me that the practise has not sent any of my details to them apart from a letter stating that I had fibroid and a miscarriage. I was then asked to book another appointment in a month’s time to see the gynaecologist. I was so upset and depressed about all the appointments with no clear picture of what was wrong with me that my husband called the gynaecologist and booked a private appointment. At the appointment and after the tests, I was informed by consultant that I would not have been able to carry a child naturally as the fibroid has taken over half of my uterus and he was surprised that despite my complaints and the fact that the original fibroid was 7 cm I was not referred to a gynaecologist earlier nor monitored!!!!!! I am now on medication and having an operation in May to remove the fibroid before my husband and I can try to conceive. I am extremely angry with the GPs for not listening to me and resulting in the miscarriage of my baby after 1 year of trying to conceive. For the past 2 years, especially 2010, I have been stressed and depressed because of my inability to conceive. I know that if the GPs did refer me earlier, all this would have been averted and feel that they require further training in regards to Fibroids.

London NW6 7XP  [2011-04-14 13:36:49]

E 's story

Miss nicoll

My doctor thinks i may have fibfoid i have to go and see someone at hospital im scared i dont even know if ill go im 51 years old only time iv been in hospital was to have my kids i would like to know if u can be put to sleep when they take a biopsie i had one on my chest and i wouldent go through that again could u help please thank you

Musselburgh eh217lz  [2011-03-25 19:53:22]

Wendy 's story

MRI Guided Focused UltraSound at Paddington

After feeling like I had a brick in my abdomin in 2006, I saw a consultant who suggested total hysterectomy. I was not happy about this, I was 47 at the time and never been pregnant, it had a sad finality about it, no other options were discussed. As I had just embarked on a degree course for the first time in my life, I did not want the interruption a major operation would bring, plus a host of unknown side effects, I was also caring for my mother with dementia & breast cancer,disabled father and clinically depressed husband. A friend gave me a newspaper cutting about MRIgFUS, the person in the article had also been involved in a car accident leaving major seatbelt bruising around the lower abdomin. After various letters to my GP about the procedure I was refered by the original consultant to one at St. Mary's Hosp. Paddington. There was a three month course of Zoladex to help shrink them, this was done by local GP surgery. Then in Oct.2007 I had two sonication sessions, at St. Mary's, not much pain at all and I walked to the station to go home. It did enable me to complete my degree and care for parents, it shrunk the large fibroid so I no longer sneezed & peed. On the down side, it cost around £4700 and another fibroid has appeared, so I'm sadly contemplating a hysterectomy.

Bishops Stortford CM22 7AJ  [2011-03-23 22:56:12]

Jen 's story

Gut instincts count for a lot - we know our own bodies better than the medics do!

Im a 42 year old mother of two grown up daughters. I have a history of heavy periods, but as many friends suffer the same I never actively sought help until my cycle went erratic leaving me period (and stress) free for months at a time. In 2007, I was sent to see a gynaecologist who did an ultrasound and said I had small fibroids and PCOS, but was happy to leave things as I didn't want any more children. In a routine health M.O.T last year I had a hormone level test done which showed I had started a premature menopause, however I then had regular but heavy periods up until last December when I had the mother of all bleeds which left me anaemic.I was passing clots the size of the palm of my hand for 12 days. Alongside this I have been through various hospital departments for severe right side abdominal pains that sometimes are as high up as my waist and others on a level with my navel but all shooting down to the groin. I have had numerous trips to the Gp to sort out pain control and have ended up at A&E for IV morphine on many occasions when its been really severe. I now have pain patches which help but don't take it away completely. Since the onset of the pains Ive had kidney stones diagnosed (by a CT scan), which I passed, but the pain persisted, my gall bladder was removed as an ultrasound scan showed gall stones, still had pain afterwards. I had my bowel checked, spine scanned, numerous xrays and finally was referred back to urology in January for yet another CT scan as she could feel a mass in my abdomen and a bladder scan showed I had a pocket of fluid (over a pint) somewhere other than my bladder. Throughout all these tests Ive asked one question numerous times to every dr I have seen - 'Could it be fibroids?' and each time was told outright, in no way could it be, as the pain was in the wrong place and only large degenerating fibroids caused pain. I recieved a letter from the urologist after the scan telling me she had referred me to gynae as the problem was in that area. I saw the first gynaecologist at the end of February who told me I have huge fibroids, my womb is enlarged to 24 week pregnancy size and one of the fibroids has a fluid centre which is a cause for concern so she gave me an appointment to see the gynae oncologist, which I did last week. The fluid can be a sign of degeneration, but also can indicate cancer. I have to have a total abdominal hysterectomy and BSO to remove the problem. The fibrid with fluid has to be kept intact as it is high risk, hence the oncologist doing the surgery. He is the first one who has actually said, yes,my fibroids could be causing the pain, when they are as large as this they are pressing on many organs (including my right kidney) and can crush nerves that supply the abdominal area meaning the pain isn't just in the central bit where the fibroids are. I can't wait to have the hysterectomy, it seems wrong to look forward to surgery, but after having such severe pain that has greatly affected my quality of life for the past 18 months, its like there is finally an end in sight and the prospect of being pain free may become reality once more, rather than just an untouchable dream. Please go with your gut instinct if you get pains like these, if they had sent me to gynae first I could have been recovered by now, and even if my experience only helps one other woman who reads and recognises the same symptoms in herself, it will have been worth posting it.

Barnsley S71 2DF  [2011-03-11 16:00:35]

Jahdeen 's story

MRI guided treatment at paddington

I am a 32 year old black female (no children) who has been diagnosed with fibroids. I have a very slim figure but since the fibroid diagnosis 3 years ago I have a pot belly which looks like im 3 months pregnant at times and looks bigger after a heavy meal (a very common theme!) I was told in oct 2010 that I could have the MRI guided treatment at St marys hospital in paddington, but have found out feb 2011 that the hospital had not applied to my local PCT for funding so this is a set back. Im hoping to have this done as i have a few fibroids that are continually growing, despite eating organic when i can and limiting my use of dairy and soya.

London w5 3pl  [2011-02-19 14:26:09]

S 's story

Hi-don't know what to do

I am 34 and trying to conceive since last two years, got pregnant once but miscarried in 16th week (Last year in August). Got diagnosed by fibroid which is 3.5cm (couple of months ago). Now i am so confused and upset, don't know where to start from or what to do? I havn't got any child so far, and i really want to be mom asap. My concern is whether the treatment (Surgical removal of fibroid) is gonna to damage the uterus or it will increase the chance of getting pregnant. Can somebody please, suggest me something, something that can help me to go for the best available option. Thanks a lot.

Plymouth PL1 5EG  [2010-12-22 22:42:11]

Mrs Carol 's story

Evie

I am a 53 year old mother of two and grandmother of 3 who has suffered heavy periods for the past 8 years or so. I am fit and active, and the heavy periods as many other women will identify with, have been restricting my life and been very difficult to cope with. Last year, I missed 6 periods and with much relief, thought my problems were beginning to resolve as the menopause loomed! In January this year, I had another heavy period, followed in February by the most awfully heavy 12 day painful period I hav ever experienced. As the bleeding stopped, I started to experience very, very bad low back pain which went on for 7 months. Despite many, many different painkillers, trips to my local A&E dept in excruiating pain, I could find no relief for the pain. My GP referred me to a gynaecologist, I had a scan, hysteroscopy and laparoscopy which resulted in a diagnosis of fibriods! Thankfully, from Feb to October I had no periods and then pain started to settle. Then I bled again and the pain kicked off once more! I have two fibriods the largest being 4.5cms (not huge ) but it is on the back wall of my retroverted uterus, indenting the peritoneum which is pressing on my pelvic nerves and causing the back pain, heaviness and burning sensations in my buttocks. I have found that a TENS machine helps, I use this daily as by the evening when I want to sit down and relax, the pain is at its worst. Like many other women, the first and only option my gynaecologist gave me was a total hysterectomy and bilateral oopherectomy! I questioned why I would need everything removed, its only my uterus thats the problem and was told at my age I didn't need my reproductive organs and it was standard practice to remove everything just in case of future problems. I am fortunate that I have children and have no need to preserve my fertility at my age, but I am very reluctant to have such radical surgery with all the associated risks, long recovery period etc. After much research, I discovered the MRI Guided therapy at St. Mary's Hospital, Paddington and got a private appointment to see Professor Lesley Regan. I went private to save time as I was so tired of the pain. I am now currently waiting to see whether my local PCT will pay for my treatment as this is not readily available on the NHS. I feel it should be for all women who are suitable as far too many women have unnecessary major surgery. At £4400 this treatment is expensive for most women to fund themselves, therefore we are sometimes left with very little option but to opt for a hysterectomy to relieve our miserable symptoms. I am peri-menopausal and wonder whether my uterus and fibriods will start to shrink soon and relieve my pain? I cannot seem to find a definitive answer to this, does anyone know? As our eostrogen levels fall, the uterus shrinks, do the fibriods shrink also? Like many other women, I am very disappointed at the lack of really effective treatments for fibriods, they seem so common and cause so much heartache for many. I really don't know what I will do if my PCT refuse to pay, I think that is likely in the current financial times we are in. I have thought about a bank loan! Has anyone else had the MRI therapy at St. Mary's? how successful has it been, I would be very interested to hear from others.

Weymouth, Dorset DT3 4ND  [2010-11-21 20:47:18]

S 's story

Embolisation

Hi, I'm 44 and have 22 fibroids. I have one that is quite large (20cm), and the rest all vary in size from ping-pong ball to small apple. I am due to have an embolisation at the end of the month. My only concern is if this works (which it should), then where are "they" going to go as I dont have inter-uterine, mine all seem to reside outside! Having now read as much as I possibly can on this absolutely awful condition, I'm just really disappointed that there deosn't seem to be that many successful procedures out there for us!

Woking GU24 9QR  [2010-11-08 16:38:21]

K 's story

My fibroid and surgery

I have suffered from fibriods and polyops for a number of years now, which all seem to grow very quickly. I had a Microwave endemetrial ablation done in April of this year which did not cure my symptoms of heavy bleeding, i then suffered from a prolapse of the utrus so just 5 days ago i had a total hysterectomy. After surgery my doctor told me that they now know why i was suffering so much. I didn't actually have a prolaps, it was a very large fibriod, which was so heavy and attached to the inside of my womb that it was this that i could feel and see at the opening of my vagina but it was also pulling my womb inside out! Feeling great after surgery, if not tired. looking forwards to no more suffering.

Coventry CV7 9GT  [2010-11-08 12:33:28]

Kathryn 's story

Katie: Fibroids & IUD

I have fibroids, I've used a IUD for many years the last one disappeared into my womb getting caught behind a fibroid, the coil tails retracted and after several attempts by my GP to remove the coil.Then I was referred to Mr Shah at Shirley Clinic and he couldn't remove it either, I was then given an appointment to see him at Shirley Oaks hospital and had a hysteroscopy to remove the coil.It all went to plan and I was back at work two days later.

Croydon CR0 5UT  [2010-10-05 05:35:08]

Brenda 's story

Endometrial Ablation

I was diagnosed with 8 fibroids, of varying sizes in April 2009. My GP referred me to University College Hospital, London. The consultant uttered one word as a solution: Hysterectomy. At 42 I was not keen, yes my family was complete, but she mentioned a total hysterectomy. I asked my GP to refer me for a second opinion at St Mary's Hospital.I got an appointment with a Tariq Miskry. Before I saw him I had another appointment at UCH and mentioned I was seeking a second opinion at St Mary's, the consultant said try and see Tariq Miskry, without me even saying I was seeing him. I had my appointment with him and felt immediately secure in the knowledge he knew his stuff. He rejected a hysterectomy, and suggested Endometrial Ablation, and a few other options too. I had the ablation 20/09/2010, alongside a Hysteroscopic Resection. Maybe I was fortunate, but apart from stomach cramps, and very light bleeding, no adverse problems. However, it's early days as I my period is not due for another week or so, to give me a true picture. I highly recommend Mr Miskry, privately or NHS, even if it's just to seek an opinion only. I know the ablation has it's risk, but most of the other procedures do as well. Let's face it there will always be good and bad comments about various treatments. In the end my decision to have the ablation was based on my 100% confidence in Mr Miskry,and that he was highly praised by other women, in various internet forums. I am not recommending the ablation to anyone, as we all have to make our own informed decision. I was not keen on the ablation, or any other procedures mentioned on this website, but went ahead as Mr Miskry was doing the procedure, and I needed an alternative to a hysterectomy.

London N17 0LR  [2010-09-23 00:10:17]

Mouse 's story

Dodgy reasoning by gp

My gp referred me to a gynaegologist for prolapse repair.Consultant advocated removal of uterus and vagina.i reurned to gp objecting and asked for second opinion refused and told dr\'s wife had had hysterectomy for fibroids and what was goo enough for her was good enough for me.Not happy,especially as I now observe hysterectomy is not always necessary even for fibroids.So fight,girls,and get the best deal you can.

Birmingham B23 5RE  [2010-08-29 16:14:52]

SB 's story

My story

Hi i am a mom married with 4 kids when i had my first son who is 16yrs nw i was told by my dr i had a small fibroid then 2 yrs later i had my second son and was told the same story the only symtom i had was heavy bleeding post delivery for about a month 3 yrs later i had by third son then my daughter followed three yrs after during the later pregnancy i experienced some abdominal discomfort just recntly i felt a palpable lump at the bottom of my belly went to the gp who arrange a ultrasound and have reportd i have a fibrous uterous about 8 small one and a big one in all my uterus is about the size of a 13 weeks pregnancy i now only experience abdominal bloating,feeling like pressure in my belly and pain/discomfort during sex i have no post coital bleeding or heavy period, hysterectomy have been recommemded i need to know if there are not any other options.terrified!!!!!

Hertfordshire AL7 3TD  [2010-08-24 04:50:00]

Emily 's story

First time diagnosis

Since christmas my waist has been getting bigger and bigger - I can't wear my skirts or trousers anymore. In May I started getting abdominal pain. It was similar to period pain but I knew that wasn't it. My GP didn't examine me and just said it was IBS. I had to go to the sex health clinic to get an examination and there I was told I could have PID so guidelines said I had to be prescribed antibiotics. The doc said she was concerned about my symptoms/wasn't 100% on the diagnosis and suggested I go for a scan. The antibiotics seemed to reduce the pain and reduce my stomach size a bit but not completely. I lied then about my symptoms to the GP to get the ultrasound but still had to wait 5 weeks. The sonographer said I had a 'very large fibroid' and two smaller ones in my uterus. The results are currently missing so I can't say how large the 'very large' fibroid is. I was very worried hearing about a fibroid and my internet was down so wasn't able to find out much. I was wondering whether they were sure it wasn't cancer. I returned to the GP and he rolled his eyes at this question. I've now got a referral to a gynaecologist but this is 2 whole months away. Since my diagnosis the pain has been getting worse, seems more localised on my left side, my left leg is cramped and swollen today. I feel exhausted. I keep wonder if they've misdiagnosed me and I may die sudddenly. I did get frequent urination but this has stopped now and my periods are pretty much normal. I'm quite worried especially as my mum died aged 40 from cancer. The GP said pain could only be from a fibroid twisting and this would present as sharp and sudden... so my pain must be from something else he says (though he's not offered to investigate). My large stomach he says is fat. I assume he's wrong and my symptoms are fibroid symptoms (or at least symptoms from whatever they found down there). I am confused though cus I'm 32, slim, white, never smoked, no family history of fibrods, never used oral contraception. How did I get this? I did get attacked and kicked in the stomach 5 years ago - could this be the reason? I also have used talc and pessaries in the past. I also want to know can this situation become an emergency? How accurate is the ultrasound (might something have been missed?). Thanks for any help you're able to give me. I really need some info. at the moment and GP is beyond useless.

London E14 9QS  [2010-08-17 12:32:38]

A 's story

Doctors appointment

I suspect I may have fibroids, in 2007 I was very anaemic, after talking with my doctor it was realised that my very heavy periods were the cause. I was prescribed iron tablets to treat the anaemia and tranexamic acid to help calm the bleeding down. The cause of my heavy bleeding was never looked into. Recently I have found that my mother and grandmother suffered the same as myself and both had fibroids. I read this website before visiting my doctor. All I want at this point is a scan to find out whether or not I actually do have fibroids. My doctor tried to put me off this by telling me that if I do have fibroids the only option would be to have an hysterectomy!!! I told him that I had been on the British Fibroid Trust website and that there are other options, as I am only 38 and have been trying for a baby for years and would still like that possibility. He then went on to tell me that there is always an option of a Myomectomy ..so a hysterectomy is not my only option like he first told me!! He also went on to say that Fibroids do not have any effect on your fertility?? After reading this website I know that is incorrect but didn\'t think it was worth telling him - I just want a scan to find out whether I actually do have fibroids, which he is now reluctantly requesting. My point of this letter is DON\'T BE FOBBED OFF BY DOCTORS and Thank you British Fibroid Trust for your website :-)

Preston PR1 0XL  [2010-08-17 12:19:23]

K 's story

Mrs

I am 42 years old. i have a grown up 22 year old daughter. i have suffered from pain in my belly for many years. my dr kept blaming it on my slipped discs. that the pain somehow would come forward into my belly, thus the pain. the pain in my belly has become unbearable now. i had an xray and pelvic ultrasound last month which revealed a bulky uterus with multiple fibroids in the subserosal posterior wall. i think 3 of them are large. i have asked my dr to put me forward for an operation as quickly as possible as i am drained from the pain. i have never had heavy periods. ever. every website i have been on state heavy periods when you type in fibroids. i dont have that but i have a lot of pain all the time. my question is how soon after your diagnosis do you get an appointment for their removal. i prefer not to have a hysterectomy but anything to stop this pain which is destroying my life now in every way.

London N9 9GA  [2010-08-17 10:56:41]

S 's story

Moon Cup for heavy periods

I have fibroids and just had one the size of an orange removed that was pressin down on my bladder and ovary.it took the docs 5 years to take me seriously.i am now 52. they kept telling me i would go through the menopause well i didnt and so glad they have removed the fibroid at last. A fibroid still remainns in the back wall of my womb. i have terrible floods for periods but the best thing i have found is using a MOON CUP internally which Boots THE CHEMIST sell and 'Always' night-time pads which capture any leaks.

London NW3 2JB  [2010-08-04 16:14:57]

SANDIE 's story

My stomach makes me look 5 months pregnant

I was diagnosed with fibroids and an ovarian cyst two years ago. After a further scan 12 months ago the cyst had dissappeared possibly due to change in diet, swapping dairy to Soya products, don\'t know. The fibroids I was told to wait and see if they gave any problems, well I have been experiencing heavy bleeding, bloating which makes me look five months pregnant, however I was called for a cervical smear test two month ago the practice nurse was unable to locate cervix so referred me to our GPs well women clinic the Doctor was also unable to find my cervix she said due to having a retrovert womb. I was referred to hospital for an ultrasound scan and vaginal scan this was done yesterday no cysts were found but many fibroids some 3cm I am know waiting to obtain the full ersults from my GP in 7 days time but I am told I still need a cervical smear but no one seems able to do it, has anyone else had similar problems? I am also taking Agnus Castus Capsules as I have heard this can help with female problems.

TAUNTON TA3 5LD  [2010-07-20 12:28:20]

Pipa 's story

The worst hell ever

Hi all i'm 42. i have suffered from fibroids for 8 years.2years ago I had the UAE procedure but it did not relieve my symptoms. I had it redone again 4 weeks ago. i'm having my period now one month after the procedure.It has been so heavy and full of huge clots and painful too. has anyone experienced this during their first period after the procedure? I'm going up the wall. been a prisoner in my house for 4 days. the flooding is so severe i have to used the super plus tampon and 2 sanitary towels one on top of the other to stop leaking everywhere. please help if you have gone through this. i'm so worried.

London w10 4ep  [2010-05-26 03:34:25]

Louise 's story

Trying to get pregnant with fibroids

I am 35, had a myomectomy 3 years ago and my periods are incredibly heavy again.Norethysterone is keeping the periods at bay. I am trying for children however clearly no success. I have recently discovered through this website and '2 women's health' website that a new procedure is available - MRI guided focus ablation. On this website it explains that this procedure is only for women who do not want children in the future however on the '2 women's health' the advice given is that women should wait for at least 3 months after the op to conceive. Can anyone please give advice as I have an appointment within the next 2 months with the IVF and Gyni clinic and I would like to go equipped with as much information and advice as possible? Many thanks, Louise

Arbroath DD114RD  [2010-04-25 13:56:26]

Debbie 's story

FIBROIDS/PAIN

I am 41 and for many years have had a lot of gyne problems. After many years my g.p discovered my linning of my womb was started to get thick! then thereafter i had a small fibroid followed by a larged one at the back of my overies which they were very painful along with the heavy periods. Almost two years now and the fibroids had been removed and I am still suffering with the heavy periods and pain and my gyne informs me i sound like i am now suffering with endometriosis! Does anyone know if fibroids come back after operations and how long!

London W8 6ef  [2010-04-20 12:23:16]

Immaculate 's story

Miss

Am 35 years and ihave been with fibroids for 7years ihave one child she is 7years and 3 miscarriages in 2005,2005 another 2009 i have very painful periods and lot of bleeding i would like to have an operation but west middlesex hospital takes its time to decide and idont know what to do

Hounslow tw3 3lf  [2010-04-15 18:28:16]

R 's story

Fibroids and infertility

I was diagnosed with fibroids when I was 27 and had the embolisation treatment, that was available in London as a clinical trial. that appeared to deal with the heavy periods and bladder infections so consequently I did not think much more about them until recently. I've been trying to get pregnant for 2.5 years and have just started having tests. all the blood tests were normal, leading the gynacologist to conlcude the fibroids are the problem. theere are apparently several subserosal fibroids but the ultrasound was inconclusive so the next step is an MRI or CT scan, followed by possibly myomectomy. If anyone has experience of getting pregant with fibroids or following treatment from fibroids, I'd be grateful to hear from you!

Gloucestershire GL  [2010-03-31 19:41:17]

Eileen 's story

Miss

I was diagnosed with a fibroid at my twelve week pregancy scan. Had it monitored for a year after and as it caused no issues I left it. Six months ago I noticed I looked pregnant and went back to my GP, after initial tests and going to various Drs was seen by the surgeon who I was under during my pregnancy. This was at the beginnig of the week. He promptly told me that it was now the size of a 32 weeks pregancy and I am booked in for a hysterectomy in two weeks time. I did not question it at the time as I was too upset but have now asked to see him next week. I do not want this proceedure and am very upset and depressed at the thought of it. Is there any reason he could give that means this is my only option?

Durham SR7 7HU  [2010-01-08 23:02:28]

Ilita 's story

Dealing with fibroids

I was first diagnosed with fibroids in 2000. My periods lasted for 7-10 days were very painful and heavy. I was aneamic, taking nurofen and iron tablets constantly, my cycle was anything between 18-23 days. I had two operations which were laparoscopic resection of fibroids which made very little difference. Within 2 months the heavy bleeding and pain returned. I then started research on fibroids. I started to take fibroid clear in feb 2009, I changed my diet, stopped eating chicken, sugary foods, cut out cheese, prawns which i love and really started to monitor what i ate. I also stopped using cosmetics with all the parabens etc. I started acupuncture and chinese medicine in September 09. My periods are now so much better, I do not take any painkillers throughout my periods, my cycle is now 27 days and the blood flow is more like a normal period. Not heavy and constantly flooding. When i asked the consultants/specialists if there was anything i could do to help my fibroids i was told NO. That is not true. You really can cure yourself, it just takes time, patience and discipline. I have suffered for years similar to alot of other ladies was always off work, couldnt go out. My life has really changed now. Dont let the doctors whip out your womb, try to heal yourself first. I hope this helps other women out there with the same problems.

London SE22 0HP  [2009-12-17 13:12:43]

P 's story

Dealing with fibroids

I am now 43 years old and I was diagnosed with fibroids when I was about 28 years old. I had my first operation which was a myomectomy about 14 years ago. I also had a cyst remove from one of my ovaries. I was told by my doctor that the fibroids would return which they have. I have no children although trying for years to conceive. I tried having assisted contraception where I ended up having a major operation as a result of a blood vessel being clipped in a lapascopy. As a result both my tubes were now blocked instead of one previously. In 2007, I started having bleeding betweem my periods I was then referred by my GP to the hospital where I did a number of ultra sounds, MRI and blood tests.
The prognosis was not good. I have numerous fibroids on the outside of my uterus,large and small ones plus a cyst on my left ovary. The doctors suggested a hysterectomy and this would be a high risk as I have had a few operations already. Thinking about this and how I feel within myself, I knew that I was not ready for a hyterectomy, so I started reading alot about fibroids, the treatments especially natural/complementary options. A few years before I had started to seek out nautural treatments, but now new that I really had to do something by educating myself and try other treatments. First I started doing acupuncture, chinese medicines, change of my diet by cutting out most diary foods, tried foods, eat less meat now I eat mostly fish instead of red meat and chicken. I have also started visualization/meditation, exercising and stretching, recently done yoga as it said yoga helps. I have been feeling very good in my body, my periods are now regular like clockwork. I have done another MRI which my doctor recommends to see how things are going. This I will find out soon. What I find has really help me in term of information was this book written by a doctor called Healing fibroids A doctor's Guide to a Natural Cure By Allan Warshowsky, M.D., and Elena Oumano. I brought on the internet. It has really given me an insight in the causes of uterine fibroids and what you can do patient to make your life better and of course to take charge of your life. I have my experience will help as well as inspire other women to take charge of their lives and to be able to change your life style to make your life better.

London SW2 3TP  [2009-11-10 22:11:20]

Faith 's story

My Story

I was first diagnosed with fibroids in 2003 or so. Prior to this time, i noticed that my periods were long, extremely painful and dark clots. I was in a very serious relationship then. Sadly for me the relationship ended because in our society,there is a misconception that once a woman has fibroid she's often unable to get pregnant.Infact i was scorned by some of neighbours especially as i was still single then.It was a sad period of my life..i lost someone i thought cared for about me and the operation was so painful, more painful than childbirth. Thanks to God today i'm happily married to a wonderful man and i have 2 kids .

Port Harcourt P.O. Box 24  [2009-08-11 16:48:06]

Annette 's story

Abdominal Myomectomy - My Experience

Hello,
I was fortunate enough to find this website when I was searching the net, finding ways to deal with my unwelcome visitors! I had a abdominal myomectomy and cystectomy on May 19th of this year and wanted to share my experience with everyone.
I have been dealing with fibroids and a large endometrial (sp) cyst since my late 30's - I am now 45. I don't have any children and at this point probably not - at least not my own! Like many of you once my fibroids and cyst were diagnosed with ultra sound, I pretty much played the "watchful waiting" game. Of course every month I cursed my body and agonized over what to do. I never had a period problem until my late 30's when the fibroids began to make me bleed heavily (super duper tampon soaked in an hour),cause pain and cramping and oh yea, the bloating! I too like many of you did not want surgery and pretty much since I was never anemic, my doctor left everything up to me. I played around with the thought of hysterectomy, myomectomy etc, etc for years.
I had a follow up ultrasound in January of this year and it showed that the cyst had grown to the size of a lemon. The ultrasound showed the 3 fibroids - 1 on the large size 8cm or so and the other 2 smaller to be pretty much the same size, no significant change. At this point my doctor helped me with more options about what I could do. While it 'seemed' obvious that nothing was malignant we could not be 100% sure unless I had the cyst removed. I had the blood tests etc., and everything was "normal" and nothing appeared canerous or out of the ordinary. I have been going to my doctor for over 10 years and I have the utmost confidence in his knowledge and ability.
At this point I knew for sure that I wanted the cyst out and while I was at it - deal with the fibroids once and for all. I was DONE with them and the symptoms they caused - they were affecting my life in almost everything I did, work, travel, fun, you name it - when you are bleeding like no tomorrow it really is awful! Back and forth I went with non-invasive procedures etc. My doctor even spoke to some of his colleagues for me. My doctor also explained to me that my 1 fibroid was large AND due to its location in my uterus - I probably would not be a candidate for a less invasive procedure. My doctor has done MANY, MANY (doctor for over 27 years) abdominal myomectomy's (even did 1 on a friend of mine). Right then and there I decided to have my own doctor perform my surgery. May 19th I had my fibroids removed and the cyst - 9 fibroids were removed (still shocked at that) and the lemon sized cyst and I got to keep all my parts!
Fast forward to today 2 1/2 months after my abdominal myomectomy and cystectomy. I have had 2 periods so far and honestly it was worth it 100%. My periods are "normal" no more flooding, no more pain, no more serious bloat!!! Hey, going to take months for my body to get back to "normal", belly is still swollen, energy level is getting there but still a bit low, just completed my 4th week back at work and every day I feel just a bit better!!! Run on sentence there sorry! I could go on about my hospital experience (great by the way) and I might do so later. I just felt like sharing with everyone out there that you have a right to feel good and to not let fibroids take over your life. Go out and get second opions, talk to people, learn all you can (this forum is a great place) and first and foremost - have a doctor you TRUST. If you don't trust your doctor, move on and find someone else. Everyone is going to have their own experience's good and bad. I know the fear, I know the aprehension, I know that surgery is scary - I felt like I was out of body the whole time!! Probably was......:) Please just take one day at a time and look at all your options. I am EXTREMELY happy with my decision and of course wondered to myself. why did I wait so long?'.
Please feel free to drop me a note or comment as I would be more than happy to chat about my experience further. And yes.....those mesh undies do exist and I was very happy to be rid of them when I left the hospital!!
Best of luck to everyone out there!
Annette

Marin County, California 94939  [2009-08-03 03:34:03]

Julie 's story

57!!

I have a fibroid that is sticking through my cervical opening. I am 57 years old. I had a vaginal ultrasound that cause heavy heavy bleeding with lots of clots.......I went to the hospital about 9 days after I started having heavy bleeding. My hemoglobin was at 8.1. I received a transfusion. Felt pretty terrible - because believe me - for me to go to the hospital I was really sick! Found a good doctor who is going to perform a Vaginal Myomectomy this month to remove the fibroid. My heavy bleeding has completely stopped now but I am going to have the surgery this month. I think I almost died from the bleeding. Can\'t give you anymore info until I have the fibroid removed. I first got diagnosed with the fiborid at the age of 52. Thanks for listening, Julie In Southern California USA

Huntington Beach 92688  [2009-06-03 05:33:06]

Charmaine 's story

Fibroids look like im 6 months pregnant

I had fibroid embolisation back in 04, it did seem to work on the fibroids that were in the womb, but it was a very painfull procedure.Last november i found a big lump in my stomach, i went to the doctor who said it felt like i was 22 weeks pregnant and asked me if i was pregnant which i knew i wasnt...So she sent me for a scan, which was inconclusive the women who was doing the scan told me i had 2 big masses but she couldnt tell me what they were.So i was sent to see a gynnaecologist who was indian, i couldnt understand a word she was saying and she couldnt understand me.Anyway i was told it was better for me to have a hysterectomy, because if i didnt and just had the fibroids removed, the fibroids would grow back anyway.So for the last 4 months i have been on prostop injections to help shrink the fibroids ready for surgery which i am having in 2 weeks time.I dont want an hysterectomy but thats all they have offered me.I have received no advice or help what so ever,i am 49 years of age, pre menopausal so they seem to think because i wont be having anymore children they should just whip it out!!!

Bridgend cf313dn  [2009-05-18 11:17:08]

Debbie 's story

Fibroids

I have just found another specialist who is going to do the operation i want - not an hysterectomy - a resection - the first specialist i believe was a butcher - gave me injections i did not need plus taking 11 tablets which would not work because of the position of the fibroid - seek another opinion if you are not happy - my new guy is fab - has not mentioned hystectomy at all! i am having it done in the next few weeks - i have been bleeding for 8 months solid since the last guy took a biopsy - one had been done a month before on the NHS - it beggars belief!

Cardiff CF3 2UR  [2009-04-22 15:57:25]

R 's story

Story of my 2 fibroids

I found out I had one fibroid a couple of years ago but it did not bother me as it was quite small.
In February 2008, I went for an abdominal massage because I was having really bad periods. My masseuse found a huge fibroid. At that time I was extremely overweight and did not notice this fibroid, only when I felt down, did I find it. It is the about 6 inches big and extremely round. When I lie down it is like lying on a beach ball. Now I have lost the weight, it sticks out.
My periods are terrible, long drawn out painful affairs and I have bled so much that I am now anaemic. I flood for about 2 days and pretty much have to change my super plus tampon and pad every hour. I try not to go out during these 2 days as I find it too much of a hassle, plus I feel so tired.
I have tried the contraceptive pill and tranxemic acid but to no avail. I went for a hysteroscopy op (camera in vagina and take samples of fibroid) in Jan 09. The coil was meant to go in but the womb was so stretched with the fibroid that he could not put it in, it would have just fallen straight out again. The surgeon was shocked at just how big the fibroid was.
I've had an MRI and got an ultrasound next week. I am also going to speak to the surgeon to discuss my test results. He is desperately trying to avoid a hysterectomy and I hope that is not the option that is left to me.
If I have the option to leave the fibroid or have a hysterectomy I am not sure what I will do. I expect I will be having an op in July 09, I will keep you ladies updated.

Reading RG30 1AR  [2009-02-27 19:51:20]

Lorna 's story

Fibroids & IUS

I have been having what I would consider heavy periods due to fibroids for around 10 months now. My GP was great and referred me to a gyneacologist at a London hospital. My periods have been having a real effect on my quality of life; I have had to take time off work due to the heaviness of my priod and feel fed up with the whole thing! I have just had an IUS fitted (literally week ending Oct 3rd 2008) so am waiting and hoping that I will notice a difference in the coming months. Its pretty bad right now though. Recently I found out I've got ovarian cysts too !.

London E1W 1LQ  [2008-10-03 16:38:07]