British Fibroid Trust Woman2Woman Fibroid Support Fibroids: Patient Guide
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Petitioner's Opinions To Support For A Call For Fibroid Research & Education Act.
Signature No. Petitioner Locality Opinions
2086.  V.D Reading
2085.  M.K Brighton Far more needs to be done. I have been in turmoil and still undecided because of lack of understanding and due to have hysterectomy this weekend!!
2084.  J.T Leeds
2083.  H.T Norwich
2082.  S.G Birmingham
2081.  C.P Messingham
2080.  S.P Hovingham North Yorks
2079.  M.A Grays
2078.  D.A Essex
2077.  O.J Grays.
2076.  T.A Grays
2074.  M.Q Bolton SOMEBODY PLEASE HELP ME. 22.02.2015 woke up with severe pain on my pelvic and back and thighs. The pain continued to increased and normal pain medication did not help,I was not on my periods, so 24.02.2015 I went to GP surgery was turned away by receptionist as no female doctor available, as she only works part time, and was told go chemist or come back the following day and see a female doctor, so I told them I will go to the A&E instead as the pain was so severe that I have been in bed for the past few days and couldn\'t seat up and was in constant pain when passing urine, A&E could not find anything wrong with me as they did blood test and urine test too and I was not pregnant, so Dr Emily Stratta from the Bolton Hospital A&E, during the A&E appointment wrote a letter to my GP asking to refer me to see a gynecologist, because all the medications she tried on me did not work, (I have the copy of that letter and of all the referrals, appointments and MR Disc). Cut the long story short of the 24.02.2015, between the journey I had with my GP and everything that transpired, lets just say the referral was made and I had to change GP\'s and also logged in a complaint with the NHS England. 30.03.2015 Bolton Hospital F Block Ultrasound appointment I attended, after the ultrasound I was told I have a fibroid, they couldn\'t answer my questions and said to go see my GP and don\'t research about it, which I did, as I wanted to know was that the reasons I am having pains, is it dangerous and what is a fibroid as I only heard about it once on the Real House Wives of Atlanta. 25.03.2015 I visited my new GP, Dr Newgrosh, who has been an amazing doctor as he has experience with polio patients and was able to change my medication on the 13.03.2015 as I also suffer from neuropatic pains due to polio from the age of 1 and half, and the neurology Dr Tarek Gaber had said to me that there is nothing else he could do for me, if i want to conceive, I must stop the Gabapentine or reduce them, those were the choice he had given me on the 13.03.2015., however Dr Newgrosh, he researched into the situation further whilst I was there, he looked in the Books and that was something Dr Gaber did not do and he had the wrong information or didn\'t bother to read the referral from 19.11.2014, which I have a copy of. Anyways back to 25.03.2015, I went to see Dr Newgrosh and he had the reports of the ultrasound and because I wanted to know more, he referred me to a Gynecologist Miss K Bancroft and explained due to my disability, I was concerned about getting pregnant and needed more information on that too, I also asked Dr Newgrosh for the copy of that referral that was written that day during my appointment. 14.4.2015 my husband and I attended the gynecologist appointment at the Bolton hospital, my husband booked a day of work and came as he felt he could explain it better the pain I am going through, we was seen by a Dr C Bouchard, who said If I wanted to conceive to take 4 cocodamol and 4 ibuprofen together or if I wanted to wait, they could put me on birth control to help the pain but would not shrink the fibroid, despite our attempt of expressing the pain I\'m going through, we was told an operation would be the last stage after trying everything else, Dr Bouchard also stated that she never seen any case were the fibroid are the source of the pain and despite me telling her that I was already on many medications which included cocodamole she insisted that I can take Ibuprofen and cocodamole together. At that time I was already on heavy medication and tried to go back to work, to help me with my finances, I worked 27 hours a week as an Insurance Customer Adviser/ Sales Agent and I also volunteered as a Zulu/Portuguese Interpreter and Children Advocate, as my passion is to become a children advocate and I speak 4 languages English, Portuguese, Zulu and Urdu, but I had to put on hold on my work, as I couldn\'t work, the pains was too much and the more medications I am taking the more unstable I am on my feet and drowsy, because of the polio, I rely on two elbow crutches and a left raised up shoe and leg brace for suffer and falling is common due to my condition however this time I was falling more frequent and became harder for me to pick myself up, like one time whilst I went to work in the call centre for the insurance, because of the fibroids I continuously need the toilet,and the ladies toilet was not on the same floor that I worked in, so I got the lift to the 4th Floor and as I walked out of the lift, I felt week and fell, I tried so hard to pick myself up and as much as I kept trying the more I became frustrated and upset that my ability to take care of myself is decreasing and I was there for about 5 minutes until a colleague was walking out and I asked her for help and told her I needed a chair to get up and so she went in and came back with another lady and a guy with the chair, because I cant get up with someone holding me, as I normally use both arms to raise myself from the floor, but this time I had to put my upper body on the chair and raise myself up, I felt so bad and cried in the toilet and when I went to lunch I couldn\'t stop crying or even eat my food, so I tried calling the Bolton hospital again and they said if I wanted to see another person instead of Dr Bouchard, I would need a GP referral, I was upset that it took long for me to get an appointment with them and that the appointment did not change anything at all, so I researched for private gynecologist local and that is how I found Spire Manchester Hospital and I told the caller my reasons for calling and booked an appointment with Mr Richard Slade. 20.05.2015 I went to my GP surgery to pickup the records of regarding the fibroid and that is when I was handed a written discharge letter from Dr C Bouchard and I then saw that the person my GP referred for me to see Miss K Bancroft and the person I saw Dr Bouchard are two different people, however I was never told that at the appointment and that Dr Bouchard is a junior DR and she never wrote that she said I can take Ibuprofen and cocodamol together and that many things she had said in the appointment was never mentioned on the letter and on the appointment she never touched on the subject about my pelvis and disability and the concerns I have to conceive. Two of my friends came with me to see Mr R Slade at Spire Manchester Hospital and I told him my story and the first thing Mr Slade did was explain to me what a fibroid was and he had this pop-up book, I was never explained in Bolton Hospital appointment about the fibroid, Mr Slade also did examine me, which was the same exam I have under gone many times since 2014 when I started going toilet a lot to wee and when the fibroid pains started, basically the exam was inserting two fingers inside my uterus and he gently with his other arm pushed my tummy down and could feel the fibroid and Mr Slade said the first thing we need to do was an MR Scan so that we know the size and he assured me that fibroids do cause pain and I remember shouting and same time with teary eyes, I said so I am not crazy then and he said no you not, as we was leaving the appointment I felt a relief but at the same time disappointment that Private care and NHS care are so different, even when we was entering Spire Manchester Hospital, my friends and I were commenting how clean and serene the place is and how polite and friendly the staff are, even the toilets are maintained clean and hygienic. 27.05.2015 I went back to Spire Manchester Hospital for the MR scan, this time I went on my own and after the scan, I asked for a copy of the disc, which they kindly provided for me and did not cost any extra. 03.06.2015 went back to see Mr R Slade and we discussed the MR Scan and how I have four fibroids, that was a blow to me, as I thought it was just one as never previously was I told under the NHS care, the MR scan also explained why I need constantly to wee, because the largest fibroid which is 7cm its pressing against my bladder, unfortunately when the surgery price was mentioned, my whole world crumbled again and the could of darkness returned, I am astranged from my family due to domestic voilence I flee my untie\'s house in 2004 and my father whom I last saw 2011 in Portugual we are not on good terms as he takes his sister side and doesnt believe or even understand the abuse and neglact I suffered from his sister who only took me for the money my father was paying her, so it is just me and my husband and friends are my family. MR Slade secretary helped to reduce the price to around 6000 for everything, I had already spent my savings for the second opinion and had spent over 1000 including transport and MR scan was around 500 something, but I still could not afford that and Mr Slade kindly suggested he will refer me to his colleague at Wythenshawe Hospital Dr Wynn. 14.08.2015, the day after my birthday, I went with one of my friend and saw Dr Wynn at Wythenshawe, it was a cold rainy day, because I live in Bolton, we got the train to Manchester and then got a taxi from Manchester to Wythenshawe hospital, which wasn\'t cheap, but it was faster and more convenient, Dr Wynn appeared to be a nice Doctor with experience and wise too, so I explained to him why I got referred privately by Mr Slade instead of my GP, Dr Wynn even agreed that I should have not been seen by a junior doctor at Bolton hospital and my friend explained to him how much pain I am in, so Dr Wynn explained to me that I need to go to my GP for a referral so that I can be covered through the NHS and he explained I would need a Myomectomy surgery and that it may be best for me to come a couple of days before the surgery so that they can stop the blood flow down that area so there is not heavy bleeding as it can result to me loosing my womb and since I want to have kids. Dr Wynn also explained how we going to need an MR Scan and that he would need to refer me to his colleague Dr Tuck and I explained that I have the MR Scan Disc copy at home. That day I was happy and felt for a while that everything was going the right step, so I went to see my doctor 24.08.2015 and he had received the letter from Dr Wynn for referral and Dr Newgrosh tried to telephone to give permission but they were on holiday so he wrote a referral letter and gave me a copy, including a copy of Dr Wynn\'s letter. I let a week go by and then I phoned Dr Wynn\'s secretary to find out if they received my letter and they had done so and she reminded me that she is referring me to Dr Tuck as discussed in the meeting with Dr Wynn, and for me to wait two weeks and then call Dr Tuck\'s secretary, which I did, now so that I don\'t confuse anyone with what took place, let me put it in a short version for you, from August until 24.11.2015 I was being passed around between Dr Tuck and Dr Wynn secretary regarding the referral that Dr Wynn had written to Dr Tuck, basically Dr Tuck secretary kept telling me they did not receive and on the other side Dr Wynn secretary assured they faxed it and was promised various occasions a call back which did not happen, so on the 24.11.2015 I finally broke down as I had enough being massed around and I spoke to Dr Wynn secretary who assured that she faxed it and even posted a copy of that referral to me and even called me back after she spoke to Dr Tuck secretary and I also received a call back from Dr Tuck secretary and said she passed the referral to Dr Tuck but he is on holiday now and I was fine with that as long as I was on the system and was going to get an appointment, and so I waited. January 13th 2016 I got a call from my manager at work and she wanted to know what was going on as I was off by now from end of April, so I told her I am waiting to hear from Wythenshawe Hospital, after that call I decided to find out what was happening and so when I phoned Wythenshawe hospital that day, lets just say there were some incorrect information given to me by Dr Wynn secretary, who later on said its not her fault she is new there and when I made a complaint with the complaints manager she was making excuses for them and as for Dr Tuck\'s secretary who pick up the call she was trying to dismiss me by saying we waiting for your referral and I stopped her by reading word for word notes from my dairy dated 24.11.2015 saying that they had received the referral and so Chlowe put me on hold and check and came back saying yeah Dr Tuck cant see you until Dr Wynn sends him the MR Scan, I told her I have a copy of the disc and I went in rage as I was upset and so she passed me to Karen who I told her how I was tired being passed around and then she told me the same that it has to come from Dr Wynn, so I went to see my GP Dr Newgrosh and I asked him to please speak to Dr Wynn and find out what is going on. 4.02.2016 I phoned Dr Wynn secretary and she spoke to Dr Tuck secretary, as I was insisting on speaking to Dr Wynn or I would commit suicide, which I was not joking at all and I am suicidal and on anti depressant, which I will state at the bottom all the medications I am on, so Dr Wynn secretary said that Dr Tuck is waiting for the MR Scan from the Spire Manchester Hospital as they requested, I called Dr Tuck secretary and asked to confirm if it was true and karen confirmed to me, and I burst out in frustration crying and asked why did Chlowe not check with Dr Tuck on the 13.01.2016 when I said I have a copy of the disc and she dismissed it and I explained how tired and painful I been and suicidal and she kept repeating I cant talk like that and passed the phone to Claire a manager and I explained to claire how I have on my dairy all the calls I have done, and how I have been the one chasing things up and making sure the secretaries are doing their job right and how sometimes I go over 48 hours awake and cant sleep due to anxiety and depression and how confined I am as I cant go out much because I need the toilet and sometimes I even piss myself if I don\'t get to the toilet on time and so Claire said they should receive the scan on that day or the following day and as soon as Dr Tuck looks at it, I will get a call from him, but before that they were saying appointments now will be in march, she did say once he sees the scan he will tell me if he can or cannot operate, well I never got that call. Because of my health deteriorating, I also suffer from constant headaches, dizzy spells which resulted me to shave all of my hair as I couldn\'t comb my hair or even touch my head, without suffering from achy scalp, in April I had woken up with a terrible headache, runny nose and sneezing and later started getting mouth ulcers, Dr Newgrosh gave me hey fever medications for the sneeze, however I continually kept getting mouth ulcers on my tongue and it would pass, but then I noticed they would come back after a week or two, and then recently in January I had one big ulcer on the inner part of my bottom lip and I spoke to Dr Newgrosh again and said it is an ulcer but I didn\'t know what was causing them and he then established that they are caused due to stress. Friday 13.02.2015 I had a disagreement with a friend on a subject that we both see feel differently about, which sadly I can not mention, out of respect for my friend and it was also the first argument we had, later that evening my work manager called so that we can write my record of why I am absent from work and as I was talking about it all over again, I became emotional and wiping my tears off as they kept falling and Saturday an event took place that terribly upset me as it involved my husband and my friend arguing because she did not clean the shower and left her and a banana peal as she was in a hurry, I was fed up of both of them telling me what they want to say to each other and I felt that they were taking out on me so I ended the girls sleep overs and get together at mines, however I did not see how much stress I was going through and on Saturday when I woke I i had a small ulcer on the left side of my tongue and then on Sunday I had four ulcers spread on my tongue and my throat is sore and hard to swallow and two ulcers insider my bottom lip and one ulcer inside my upper lip, so I went to the Doctor on Monday 15.2.2016 to find out if the was anything I could take to help with the ulcers and well I expected a simple and short appointment, however I had never imagined or expected what the doctor was about to tell me, he told me last week Thursday, Dr Tuck\'s secretary phoned him, this was not a big deal for them phoning him as they did so on the 13.01.2016 and told Dr Newgrosh that I was expressing that I am suicidal and he replied to them, what do you expect after all that they were putting me through, anyways going back to my 16.02.2016 appointment with Dr Newgrosh, so he said Dr Tuck\'s Secretary called him last week Thursday and told him that Dr Tuck said the fibroids are not big enough to operate, however they haven\'t sent him a letter yet, hearing those words was like a sad joke, how they took a long time to only dismiss me and say they cant operate on me, tears started to roll down my eyes and I kept trying to remain calm and breathing heavily so that I don\'t burst out crying and cant breath, but unfortunately it was too late, as I got up and got the written prescription and headed to the door I became more sad and couldn\'t stop crying, even the doctor came to open the doors for me, as he always likes to do that for his patient as they are heavy doors, I was on the hallway trying my best to calm down and wipe my tears as I was about to passed the reception room were the was patients waiting to be seen, when Dr Newgrosh expressed how bad he felt and that it broke my heart I continued to cry more but thanking him as he has done more than any other GP\'s have done for me throughout my life, and Dr Newgrosh said he will speak to Mr Slade and see if there is anything else we could do, I couldn\'t stop crying or even say goodbye to the lady in the waiting room who I had sat next too and was shocked when I asked her in urdu if she would like the magazine I was reading as I knew I am next to see the doctor as number 9 had gone in a while ago and I am number 10, I tried to not cry out loud but was still breathing heavily and could see eyes and heads rolling and towards my directions as I passed the room with my head looking down and when I got outside the waiting area I stood there crying so bad but had to wipe my tears and get myself together to go outside and had to go cash machine and get some money for the taxi but when I was there I was still crying and saw one woman buying scratch cards and I asked for some too, asking the lady at the counter which one people win on as I needed money badly and I bought couple of lucky dips for lotto and euro millions as I want to so badly to win enough to cover the surgery, the woman asked me if I wanted to talk, but I didn\'t want to burden her or and was worried that other customers may come and so I said its fine as she held my hand and said pray to GOD, well since the fibroid problems have happened I had lost even more faith in GOD as I felt its not fair that I have been through so much to get to where I am and yet I am the one punished and not my evil untie and that I am the one isolated without a family and how lonely I get in the flat on my own when my husband is out at work, all I have are my 5 gold fish and TV and the internet. Ever since I was young and going through the abuse and neglect, what kept me going was the hope of having a family of my on one day, and I believed in getting married first and then start a family which is why when I was young and lived in hostel, street and friends homes I practiced safe sex. My husband and I have stopped being intimate since April and sleep in different rooms, however I did try in January 2016 but intercourse was painful so no more until the fibroids are removed and constantly argue as he feels I should keep pushing the doctors and even friends keep phone and texting on what I should say or do, however non of them are in my shoes and don\'t see how much my GP does, so I decided on weekends to put my phone on silent and after business hours during the week so that I do not deal with friends and even had sent a message saying I will keep them updated once I get information but for now I need my space. Because of me crying hysterically after the appointment with Dr Newgrosh, I came home and immediately telephoned my manager on her mobile as it was her day off and felt I could speak to her as she has been following it as we kept in contact, so when I woke up the next day my throat was even more tighter and painful as if I swallowed razors and they cutting my throat and when my husband called me from work I couldn\'t even open my mouth and speak properly and I couldnt even eat and ate once the whole day bread, backed beans and plain ommlett and it took over an hour as it was sore as I was chewing the food and also painful to swallow, so I am now taking time off to calm myself so that the mouth ulcers can clear instead of it getting worse like it has done the past few days and I continue to take Benzydamine to help, even though I am not doing nothing but rest in bed and watch tv and taking my medication, I can not shut it out of my mind not even for a minute and that is why I decided to come here and tell my story in the hopes that someone can help me, I also need to search for a medical advocate to help me, so that way I don\'t feel alone in this fight and stressed. I just don\'t understand how a second opinion says one thing and yet NHS is saying a different thing, and with regards to Bolton Hospital I had a long conversation with a manager, which I have reordered and the manager was telling me, Miss Bancroft could not see me that day as she was in an operation, however she did leave a clear written instruction for Dr Bouchard and it was Miss Bancroft who decided not to operate on me and the manager at that time was then given me an option to see Miss Bancroft and this time I wouldn\'t need a GP referral, by then I was referred to Wythenshawe and had already gone through the MR Scan so I said no. But what puzzled me is that when I asked why didn\'t they do an MR she was saying that not all cases get an MR as it is very costly on the NHS and that is why they have to choose the seriousness of the case that gets an MR Scan and I even had asked how many Fibroid does the ultrasound show and she couldn\'t answer that and when I said the MR shows 4, she then explained that the ultrasound does not detect that as they go by sound wave. Basically she had an answer for every excuse, also she said I could write in to request my record and when I did, I got a letter and an application saying so we can release your NHS record, I must pay a fee, I felt that is a way of the NHS making it harder for patient\'s to log complaints and because I was focusing on my health, I decided to let it go. I have come up with two ideas and one is to get an advocate and fight the NHS for the surgery and the other one is to find a way to fund the private surgery, so maybe raise money through a charity page, I am not sure yet, as I am still research online. Ever since I started having periods they have always been heavy and inconsistent, sometimes I get two periods in one month and a lot of blood clots too, as for the rest of the medication I am currently on are: Paracetamol 500MG TWO four times a day, Naproxen 250MG 2 Three Times a day, sometimes I take it four times a day, due to dizzy spells when I seat up or walking, even when lying down. Mefenamic Accide 500MG one Three times a day when I am on my period, Setraline 100MG, one at night before bed, for depression, Codeine Phosphate 30MH 2-4 Four times a day, depending on the day how painful the fibroids are, Omeprazole 20MG One daily when I take mefenamic acid, Tranexamic acid 500mg when on periods, to reduce heaviness of the periods, as its so bad that I leak on my bed and in 2014 at work I leaked on a chair and ruined it and had to go wash and dry my clothes, Amitriptyline 10mg two at night, they help me with the neuropatic pains, and I was also give oral morphine to help with the pain, but Dr Newgrosh became concerned with my depression that I was miss using them, as they knocked me out to sleep, so one worst days I would drink two or three caps full of them and only have a little bit left in one bottle, that is almost finished. If anyone knows in here what other steps I can take to get some results please do not hesitate in contacting me as I fear that one day I will do something drastic as right now I have been contemplating of going to Wythenshawe hospital and demand to see Dr Tuck whilst I take all the medications and die in front of the person who dismissed me without even seeing me or giving me a chance to explain myself, however I have my husband to think of, because I can not just think of myself, and my husband has just gone back to work after taken long leave to be with me, as he feared I may take my own life, because of my condition, he had to take more of the responsibility of the chores and even cooking and he would come from work at 8pm and cook for us, put the clothes in the washer and then wake up at 5:30 for work.
2073.  N.S Keighley I have suffered from fibroids for about 7 years after having continuous blood transfusions my doctor decide to do something about them she said if left untreated you\\\'re heart will stop with the amount off blood loss because I\\\'ve collapsed a few times and been very poorly with them I had a uae about two years ago now although the bleeding a not as heavy but the pain is still unbearable I don\\\'t think I can go through this amour off pain every month I will probably have a hysterectomy eventually
2072.  K.D South Queensferry This is such a debilitating condition with a real lack of research into causes and treatment. More research is necessary to ensure so many women can lead normal, pain free lives
2071.  E.G London
2070.  K.R Hove
2069.  N.J Leven
2068.  J.R GRIMSBY
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