British Fibroid Trust Woman2Woman Fibroid Support Fibroids: Patient Guide
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Story List
Included here are articles and stories written by readers or others.
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, 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]
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]
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