British Fibroid Trust- fibroids, myomectomy, hysterectomy, uterine artery embolisation, hysteroscopic resection.

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Welcome

British Fibroid Trust is set up for women with fibroids. We aim to:

Inform you what fibroids are and all available treatment options with the possible side effects so that you together with your gynaecologist can make informed choice on your suitable & appropriate treatment.
Be a venue/platform where women with fibroids can ease their anxiety by exchanging their experiences and discussing their concerns with each other.
Campaign for more research into the understanding of the cause(s), early detection and diagnosis and better treatments.

British Fibroid Trust is a UK based voluntary not-for-profit organisation which is run by volunteers. We provide balanced information, independent of health care provider's interests.
We Do NOT promote private or commercial practices of gynaecologists or interventional radiologists.

BFT Campaign For More Research Into Fibroid

Petition Signature Counter		Petitioner's Opinions
Target	10000	why is it that men just want to perform a hysterectomy when there are so many alternatives - i have just found another specialist who will do what I WANT - not what he wants [Debbie, Torfaen] I feel very strongly about improving research and treatment of fibroids. I recently had a myomectomy and there were complictions which resulted in me losing 4.5 litres of blood (approx. 75%); this meant that I nearly died and had to have several blood transfusions. Due to the surgeons having to work quikly, my right fallopian tube was damaged during the operation, which will affect my fertility. I have not yet had children and would like to in the near future, but my fertility has been compromised due to lack of funding, research etc. Please move this towards the top of the health agenda. Lavinia [Lavinia King, Bristol] Fibroids need to be top priority for research and male doctors need to be reeducated and to learn, listen and help regarding the pain and suffering that fibroids can cause. [Miss Deana Ellen Ferris, London] We, the undersigned, demand that the leaders of our government to put fibroids in the top of agenda for research fundings for better scheme for early detection and non-invasive treatments. [Catherine Hancock, Abertillery] . [vanessa baldwin, amlwch] I believe this is an area which needs much more research. [Catriona, Cupar] more research should be done [Fiona Wyllie, Ratho] Enact legislation to require the medical establishment to disclose all options available to women for treating fibroids. Provide sources for information to patients to learn more about each option including discussion boards on the internet wherein fellow-sufferers discuss their experiences in an open and candid forum. [Mary Collins, Bowie, MD USA] i saw a professional and all he wanted to do was a hysterectomy - i saw someone else and has a resectin a week ago and feel fab - i am back in work - some of these men are butchers! [debbie bainbridge, PONTYPOOL] There is definitely a need for more research and better training for GPs, obgyns and consultant gynaes in this area. it took nearly 13 years from my first symptoms before I finaly found out I had a fibroid - I had started to pass clots and had slight back pain to start and my cycle became shorter and periods heavier over this period of time but was told that this was to be expected!I had UAE in October 2007 and although because of the size of my fibroid it took a while for things to get better it is the best thing I have ever done and I am glad i spent the time to search out a good gynae and interventional radiologist - it took about 18 months and vistst o 5 gynaes and 4 hospitals [Sian Morgan, HAVERFORDWEST] I feel strongly about improving research, care and training on fibroid. [olamoji akinmolayan, london] I have just cancelled my hysterectomy that was due to take place next week. My gynaecologist wanted to 'whip' out everything including my ovaries even though I have only just turned 43. I have heard of good results in the US where Mifepriston or RU-486 has been used to treat fibroids. I want to take part in trials of this drug here as it sounds amazing. Is any research going on in the UK on the effectiveness of this drug in treating fibroids? [Barbara Sayers, Borehamwood] Just because it's not cancer doesn't mean it's not worth treating. Surely quality of life needs to move higher up the agenda. [Judi Evans, Bingley] I certainly agree with the view that Fibroids have not received as much attention as it should, considering its prevalence and effects on women. I will be happy to see that more is done towards research and education in the UK. [Uchenna Eke, Chadwell St Mary] I was diagnosed with fibroids over 10 years ago and had they been treated then I would not now be put in a position where I have to consider an hysterectomy at the age of 43! [Razia Nazir, Bradford] Yes indeed more research! on solutions and reduction of risks. [Christine Akar, Worcester] Having recently undergone a myomectomy I know how miserable having a fibroid makes you and affects your day to day life. As much research as possible should bedone in to the cuases of this condition. [Carolyn Dalton, Leeds] Every woman should be fully informed of all options . A young member of our family was fortunate to receive this in London. [Marian Marcham, Leeds] I fully support research into this condition and would like to add my name to the campaign to raise more awareness of the condition which causes much suffering to so many women. [Pamela Welland, Bosham, Chichester, West Sussex] More guidance needs to be given for women who wish to remain fertile and need treatment for their firbriods [Lisa, Carshalton] I have resisted surgery in the hope that an alternative to the current options will come to light. I'm still waiting [Miss Lesley Williams, Islington] Living in the North of England the only option here to be completely free of fibroids is to have a total hysterctomy. I don't think anyone truly understands the misery of fibroids,both physically and mentally, unless they have suffered themselves. I have had some relief in the last 12 months with Zoladex. However, there is only 1 GP in our practice who can administer this, and it is almost impossible to get an appointment with him! There should be more research,training,and treatments available to all women in this country. [Diane Shankland, Wigton] Also need research into how effective current treatment is. From experience everyone is offered a Mirena regardless of whether this is the best option. Side effects are dismissed as trivial and women are supposed to put up with them as long as there is some decrease in bleeding [helen albon, emsworth] Doctors need to be more sympathetic to how it affects womens quality of life, not one person has asked me this question, to which my reply would be i havent got one. more women need to keep going back to gp and complaining. [tracy noon, Portsmouth] My periods are a nightmare as i have 5 fibroids.Im getting womb ablation in 2 weeks, this being an alternative to a hysterectomy.Hope it works. [sheena o'neil, cairneyhill] more reseach also needs to be done on why so many black women have fibriods. [g harris, london] I have just been diagnosed with 3 different types of Fibroids at the age of 40 after years of symptoms which have progressively worsened. I cant accept hysterectomy as the only complete solution when I am yet to have my first child. I dont want to compromise my fertility. More research needs to be made into other options to help sufferers make an educated choice. I live in Dubai where most doctors are British or follow British medical practice. [Margarita Gallego, Dubai] I am astounded that such the NHS is still offering such invasive surgery as the ONLY option to thousands of women. There are alternative treatments out there that should be readily available to every patient. Either some of the medical profession is ignorant to what is available or there simpy isn't enough funding to make alternative treatments available. However wouldn't it far more cost effective if the NHS only had a patient take up a bed for 2 days( with UAE) as a opposed to 2 weeks ( myomectomy)? It doesn't make sense. [claire lim, London] Having had fibroids for at least the past 10 years at the age of 54 they are still growing. I am battling with the medical opinions and this afternoon have an appointment when I will be insisting on a referal to at least talk to a radioligist who performs embolization to then be able to evaluate for myself another option available, apart from hysterectomy which I have been resisting for the past year. Waiting for referals seems such a waste of time. I am now on my third gynaecolgist as they are so narrow minded. [Anne Johnson, Brighton] I have recently recovered from a myomectomy, after years off misery and ill health, which was misdiagnosed as "its your age" (hb of 6 by final diagnose of fibroids).I then had the misfortune of being referred to a consultant who only overs hysterectomies!!! Not accepting this i requested a second opinion and finally found a consultant who was willing to give me a myomectomy to retain by uterus!!! Am now recovering but feel more support and research is needed in this area - I fought for my treatment but how many women actually question the their treatment. Many times I did think how my treatment might have differed if I was paying for my treatment! Fibroids effect millions of women, resulting in time off work, depression and fatigue - most of these women carry on because they are working women, mothers, keeping the family home going and do not have time to moan -they just cope!!! I also ponder on how different it would all be - if men had uterine fibroids!! Sorry to be cynical but 3 years of fighting for my treatment on the nhs (as a very high taxpayer) has taken its toll. My advice would be to "step away from the table and get a second opinion". [liz williams, leicester] Treatment options need to be made available to the patients throughout their treatment - we would not be looking at these websites if we felt we were being given all our options with their side effects discussed honestly throughout. [Grace Gray, Sale] i first had a ovarian cyst in 2005 op and still not pregnant and low and behold i now have Fibroids but i still trying before it's too late. [Kimla (Kim) Johnson, Ashton-under-Lyne] As a long term sufferer of fibroid, I fully support that more effort be put in the research for the fibroid and a permanent cure found. [Milicent Okonta, Gillingham - Kent] My large fibroids are making my life hell and after causing me such intense pain that caused contractions and a late miscarriage, I want to know when I will ever feel normal again. Any research that can support prevention or non-surgical cure I fully support. [Gill Amos, London] Having been diagnosed with fibroids since 2006, I am still trying to decide on my options and believe better guidance and more research should be done [Nisha Kharbanda, Edinburgh] i am in the process of having a myomectiomy open surgery. i am 27 yrs old and previusly had no idea about this condition and all the research i have done and what the doctors told me is that this is an older persons illness. i think youger people need to have ultrasound testing so that they dont have to have such an invasive surgery especially before having children as it can potentially effect you.there is also the possibility of having to have hysterectomy which is very upsetting for a young woman. i found it stressful as i have no children. [maryam hassan, leeds] It is about time the NHS looked into more non-invasive treatments for fibroids.1. It is cost effective, cheaper than hysterectomy. 2. Reduces the misery suffered by thousands of women.My Gp in Kent was fantastic the same cannot be said for my experiences in London when I was a Nurse. [Tracy Jane Wilton, DEAL] Please consider that women need access to early detection and non-invasive treatments when it comes to fibroids. I have been lucky that I have been referred within a month, however many aren't. [Alison Alcroft, Accrington] I believe that gyneacologists must be more forthcoming with their patients regarding all the treatment options for fibroids.Too often surgery is sold as the only option.This needs to change. [Shirlene Hoffman, London] I don't suffer with fibroids, but a good friend of mine does. It's another one of those conditions that we know very little about unless we're suffering from it. More awareness would be good. [Patricia kenny, Mount Vernon, Glasgow] Please do something to educate and improve the attiude of the male AND FEMALE surgeons and Drs. advising and treating women today. Barbaric and primitive hysterectomy should be AVOIDED at all costs not the first option presented, it's not even cost effective. Get some research going into the cause, prevention and safe cure of one the most debilitating of illnesses that should no longer be ignored. [Emilie Selbourne, London] I would like to support this petition as the mother of a sufferer (about whom the entire family has been anxious for too long).There is an obvious and urgent need for more energetic research and action. [Hazel Selbourne, Urbino] My doctor suspected Fibroids, 2 months ago, after my visit about painful period. She send me for ultra sound and virginal screening yesterday. From chatting with the nurses, I am sure I've got Fibriods. I don't know the type yet because I am yet to see my doctor, but I am frighten and confuse. I started researching, and found this website. Any help would be appreciated. [Regina Agboh, Adel, Leeds] Detection and management of fibroids appears to be hit and miss! More research has to be funded to avoid misdiagnosis and to prevent prolonging the misery for sufferers. [Sharon Clephane, Oakham] I am due to have a Hysterectomy next week due to fibroids I am in that much discomfort that I can't wait. I hoped to keep my womb but this was the only option offered and I can no longer put up with feeling this bad. [Karen Paskin, Dudley] IT'S ABOUT TIME WE HAD A PETITION,PLEASE SHOULD ANYBODY ELSE READ THIS, PLEASE GIVE IT YOUR SUPPORT. [paulette morgan, kingsbury] I have recently been diagnosed with fibroids at a private clinic. I am shocked at the lack of advice and information i have been given. I'm having to study and research myself. This subject needs to be taken more seriously and the medical approach by some doctors really needs to be re-addressed. [Femida Latif, Birstall, Leicester] I was only diagnosed with fibroids in February but since I've noticed that's there's so little known about this (I didn't even know they exist, let alone that they affect so many women) I want to see more research done and more education for young people. [P Mills, Wimbledon, London] I was disappointed that nothing could be done about my fibroid symptoms and pain in the UK. I had private Uterine Fibroid Embolisation treatment in Australia and have not suffered the same extreme pain as a result. The treatment has also allowed me to carry my son full term and have a normal pregnancy. I do not think I would have been able to have a child had I not had the procedure. More research needs to be carried out so that more women like myself are able to reduce or stop the symptoms of fibroids, as well as have the opportunity to have a normal healthy pregancy. [Charmaine Lee, London] I think it is important for the government to fund research into this condition. I have suffered with this and underwent an operation in 2004. The condition has returned and I am facing further surgery again. [Gifty Nartey, London] Please put more money into research this problem affects many women and leads to many lost working days and possible job loss because of problems associated with fibroids please help. [Jacquie Christopher, London] As a sufferer of fibriods it would benefit all women and also help employers who have employees who suffer from this condition. A lack of understanding and exposure of the condition means that colleagues, managers do not appreciate what you go through and the affect it has on your lifestyle. [Cassandra Hamilton, greenford] I was diagnosed with Fibroids 5 years ago,have had a myomectomy and am appalled at how little advice and support that has been offered to me. My next option is a hysterectomy!I'm determined to do my own research as I'm only 34.We need more research and less ignorance! [Louise Henderson, Arbroath] I under went UAE treatment 2 days ago. We need more research into treatment options. [michelle, Whitstable] More education in Europe on fibroids and training for gynos to look at alternative solutions to hysterectomy. [Julia Homayounnejad, London] I Have 2 small Fibroids but i dont know much about them or the long term effects of them, This should be a concern to the goverment as a lot of women in England suffer withthis problem, [jill travis, middlewich] i am 28 years old and never heard of fibroids, i now have a very large one blocking my cervix and may have to have a hysterectomy, further education and research is needed as i had my symptoms put down to just having a heavy period!!!! [Samantha Bradley, Barnoldswick] Research needs to be done. It makes my life unbearable and resulted in an extremeley difficult pregnancy [Claire Robertson, Northampton] There needs to be a routine check on all ethnic women, because some people do not know they have it. [Toyin, london] A better understanding of fibroids is required, including their causes and effective treatments. After almost two years of period misery (up to one week of pain severe enough to interfere with normal day to day life and up to two weeks of heavy bleeding), I was diagnosed with fibroids. The (female) docctor I am now working with is excellent and has given me several options on treatment. However, the only reason I was assigned to her was because I stood my ground and refused to see the male doctor I had originally been assigned. Suffice it to say that he had no empathy for my situation; treated me as though I did not have a brain (dismissing my questions about the procedure he wanted to do - no choice offered and no full explanation of the process offered). The only way I can described his examination was that it was not dissimilar to the way the vet used to examine cows on my father's farm. There is clearly a need for more female doctors in this area and/or for more empathtic male doctors as this is a highly sensitive issue: you are already worried and feeling vulnerable; the last thing you need is for somebody to dismiss your concerns about future fertility as trivial. If you have similar issues, I'd recommend standing your ground until you get the doctor and choices you deserve as a customer of the NHS. [Joyce Lindsay, Farnborough] just been told that have fibroids more test to undergo very scared at the moment [amanda bowker, liverpool] My mother is suffering from fibroids but she is so scared to speak with doctors and do something about it. I want to find an alternative method of reducing the fibroids and would like more campaigns to be done for women to have fibroids investigated at the earliest opportunity [Rola Haddad, London] Yes - more research needed. [Mary Green, Grantham] i found the only way to access information about fibroids is from the internet itself.i would also like to know what other treatments there are for women with fibroids. [Joan Henry, Streatham, London,] We need more research as there is only western women who are able to obtain the information on the subject. If research was widend and more money put into it this may help some of the women in the rest of the world. I am sure ohters feel that there is nothing that can be done but with research they may just be able to stop the Fibroids in the first place, and stop sufferes world wide. [Jean Verity-Doyle, Crumpsall] My fibroid was dismissed by various bodies for 2-3 years and through my persistence was removed last week- wth near tragic results. It had gotten so big it was a major op and then I had internal bleding and and had tobe re-operated on. [MRS S Khan, Bury] I have been told by telephone that I require a hysterectomy for a 'possible' fibroid! How arrogant can members of the medical profession be to break serious news in such a manner? My so-called consultant has not even explored all other areas for possible diagnosis or alternative treatment with me. I am getting a second opinion. I am angry and I advise other women to get angry and demand quality treatment to suit you and refuse to undertake any treatment until you are absolutely certain is is right for you. The medical profession must stop experimenting with women's bodies now! [Naomi Spiers, Bristol] I was told I have 4 this morning, after having pressure on my bladder for several months, and heavy periods and pain for most of my adult life. (which I actualy thought was normal till reading this site)Plus the accompanying anemia. I will find out my options in a week, its been good to read there are other options than hysterectomy, though I have children it seems a bit severe [Rose Young, Sheerness] WOMEN ARE NOT BEING TOLD ALL THEIR OPTIONS WHEN BEING DIAGNOSED WITH FIBROIDS. THEY ARE BEING TOLD THAT HYSTERECTOMY IS THE ANSWER !!! ITS THE ONE SIZE FITS ALL OPERATION. IN REALITY ITS JUST SWAPPING ONE PROBLEM FOR ANOTHER. WOMEN SHOULD BE TOLD ALL THE FACTS SO THAT THEY CAN MAKE AN INFORMED CHOICE ABOUT THEIR BODIES. [Shelagh Boyles, henbury Bristol] Hysterectomy is major surgery in every sense and surely should be considered only after all other options have been explored.It's sad to know that years after our mothers suffered unnecessarily the situation doesn't seem to have changed. [Joan Cox, Parkstone, Poole] do believe not enough info or research and advice availbale [jan t, ruislip] Please do this so that my old pal Lynda can get her life back again (and stop being so grumpy). [Victoria Gill, Northolt] There is a real lack of support, sympathy and information from doctors and the the government for women with fibroids. We need more research to be carried out on this condition, so that women have more options and the condition can be treated properly. So far there only seems to be temporary fixes for women who still want and can have children. This issue needs to be addressed. [Avril Edghill, London] more research is needed [Nicky, london] More research is necessary and a greater priority should be given to research and development to find the causes and treatment for fibroid disorder, which affect so many women. [D OReilly, New York, NY] I find it shocking how common this problem is, yet how little information or research has been invested into it. I am currently trying to get second opinions, whilst in pain, there is so much ambiguity and it really is time to do more [uchENNA NGWABA, beckenham] I think everything should be done to try and reduce the impact of fibroids [Obi Okoye, London] we need to look further into what causes them as it all seems to be a bit vague to me. [wendy anzani, newport] no choice given for non-invasive treatment. [santosh, hayes middlesex]
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