Fibroid Network Online Patient Led Volunteer Support Group

Time 2020-12-08 06:03:04

Web Name: Fibroid Network Online Patient Led Volunteer Support Group

WebSite: http://www.fibroid.network

ID:127263

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Online,Patient,Fibroid,

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Fibroid Network is a UK based, Patient Led volunteer, support group, serving as a focal point for women’s fibroid and health issues with the aim to improve women with fibroids, healthcare and health education in the United Kingdom and internationally.It is independent, group, sharing up to date information about fibroids, helping women to make informed choices about alternative treatments to hysterectomy (removal of the womb). Fibroid Network will be providing details of International news discussion groups, events, contacts, books articles to the Community. Continue reading Uterine fibroids are non-cancerous tumors on the uterine muscle . 99.95% of fibroids are benign remain benign, even if they grow in size. Not all fibroids become very large they vary in size from microscopic sizes to Watermelon size. The Authorsgrew to 8 months pregnancy size weighed 11 pounds when it was removed. It was 22cm high 33cm in diameter. It is not unusual for women to have more than 1 fibroid . (The author had 4). One US Doctor informed me that he’d removed 200 from 1 patient still managed to retain preserve her womb. A myomectomy is the removal of just the fibroids, its similar to shelling peas from a pod if they are numerous. There are many types of Myomectomy. Open Myomectomy has the best results for symptomatic Large or Multiple Fibroids. This article is an overview of Fibroid Research in relation to Diet, Treatments, Black women fibroids, statistics, fertility and social issues involving fibroids.Because of the size, location number of fibroids the traditional myomectomy , can take longer to perform than a hysterectomy. This has led some Drs to prefer the quicker option of either a minimal surgery myomectomy or a minimal or open surgery hysterectomy, as it solves in their minds , all of the women’s problems. Drs have used Minimal Surgery to clear their waiting lists quicker perform more operations per day. Hysterectomies are used to train Junior Doctors on female anatomy, which they could not obtain if the womb remained in the body. I attended a Fibroid conference for Drs in approximately 2000, where a Senior consultant Obstetrician was complaining that the Junior Drs couldn’t persuade as many women as previously to undertake hysterectomies, so they were having to send them to Third World Countries to get their training. In the same conference the Dr also complained that there were some feminist women who wanted to keep their wombs for no reasoThe National Institutes of Health in America have carried out very large studies of Black Women in Fibroids, involving reviewing the patient details of over 50,000 women. This has provided a lot of information on issues for Black Women Fibroids. In the US, it is a requirement of research to include the race of participants. It is not a requirement in the UK, which is why in the last 8 years, information on specific UK Black Women’s health statistics is limited. Another Problem in the UK is auditing of treatments for Heavy Menstrual Bleeding stopped in 2014. This has made it difficult to estimate the success or failure of current fibroid treatments. There is also No specific guideline for the condition of fibroids. Patients are often receiving multiple treatments, with no benchmark of care.Fibroids are still the leading reason for hysterectomies for Black women in the UK. A Heavy Menstrual Bleeding Guideline Update, disappointingly, brought in the use of Hysterectomy as a 1st line treatment.UK Fibroid StatisticsIn the UK in NHS hospitals during 2012-3, there were 30,929 diagnosed with fibroids by hospital consultants. It is not clear what the current position is because Drs do not record the reason, surgeries are used ie the statistics may show, there were 500 hysteroscopies. But that doesn’t explain what condition, they were used to treat ie fibroids, adenomyosis, Endometriosis ovarian cysts or fibroids etc. It is therefore difficult to obtain figures. The same is true for Hysteroscopy procedures, which have never been audited.Parallel to the poor coding lack of audits, has been an exponential growth in treatment harmed Patient Groups. Particuarly for Endometrial Ablation, Hormonal IUDs used to treat Heavy Menstrual Bleeding. There are also no drugs that permanently prevent or cure fibroids. There are only drugs that may reduce heavy periods but often with significant side effects /or reduce fertility during treatment. There is no evidence that use of any of the drugs used to “treat” fibroids or suspected symptoms of fibroids such as heavy periods improve womb or ovary health. In fact the contrary can sometimes be the case. There is also no evidence that any birth control cures or prevents fibroids or stops their growth. At most, many seem to mask symptoms temporarily. Some women have found that their symptoms are worse than before they started, within 6 months of medical treatment often the fibroids return to the original size.It is estimated that 50 % of UK women of all races will have fibroids at some point in their childbearing years. Many will not require any treatments as they often remain without symptoms. Some remain small women only become aware of them due to having pregnancy scans or general check ups, where they may be found incidentally.Many women have complained to our organisation Femisa (a voluntary patient led org, advising women re fibroid embolization) that they are ony offered “castration” (Hysterectomy) as a solution to their fibroids they re not being offered less invasive treatments which preserve the womb, whether or not they intend to have children. Women expressed the desire not to have the option of having to go into an early surgical or medical drug induced menopause because Hysterectomy is still being offered by some Drs as the 1st resort, rather than the last.The vast majority of hysterectomies are performed for benign indications thus to improve the quality of life rather than save lives.Patients have indicated however that hysterectomies are the Dr’s choice rather than the patients choice. Few are offered any other options. Unfortunately, Drs are not being trained to perform Open Laparotomy myomectomy as part of their basic training, which is often the best option for women with Large ie over 10cm Fibroids / or Multiple Fibroids. This restricts patients choice.Those with Symptoms include:Heavy menstrual bleedingPeriod painBloated SensationsIncreased urinary frequencyBowel disturbanceHowever, these symptoms are also common to other conditions, so other issues should be ruled out 1st before Fibroids are treated ie. New Heavier Period or even daily Bleeding can be induced by other prescribed medicines:Anticoagulants /blood thinners. Medications to prevent blood clots (non-steroidal anti-inflammatory drugs, aspirin, coumadin,heparin)Antidepressants / SSRI’s AntipsychoticsCorticosteroidsHerbs: ginseng, chasteberry,danshenHormonalcontraceptives Displaced or IUDs perforating the Womb liningTamoxifenStatins, FluvastatinSome symptoms can also arise from damage from previous surgery causing new Complications. So it’s important to get your Dr, to review all of your other medications your previous surgeries.Black women are more likely to have Large symptomatic fibroids, at younger ages, which may be why they are diagnosed more frequently.Fibroids is the most common reason for a Hysterectomy. 40 % of Hysterectomies are for fibroids.Black-white differences in factors related to hysterectomy. 53,159 hysterectomies were reviewed in Maryland, USAFindings:The average annual age-adjusted hysterectomy rate was higher for black women (49.5 per 10,000) than for white women (41.2 per 10,000). For 65.4% of the hysterectomies in black women, the principal diagnosis was uterine fibroids, compared to 28.5% for white women. In comparison to white women, black women having hysterectomy were found to have an increased risk of one or more complications of surgical or medical care . This may be due to poor, Drs Surgical Skills in the management of large / multiple fibroids.In a study of more than 53,000 hysterectomies, black women were more than twice as likely to have a diagnosis of uterine fibroids as white women, were more likely to have complications, had a longer hospitalization, and had more than three times the in-hospital mortality rate. (Hysterectomy and race study). This may be a racial bias in detection ie due to an assumption that fibroids mostly affects black women. A 2013 study, however found that up to 70% of white women had fibroids vs up to 80% of black women, when ultrasound was used. The fibroids ranged from microscopic size to watermelon size. Clearly, Uterine Fibroids is an all women condition. The issue for healthcare should be finding it out what triggers fibroids to become symptomatic or larger. Research has started to look at this. The most promising research is looking at Environmental Endocrine (Hormone) Disruptors ie looking at chemicals that women are exposed to, throughout their lives, that change their hormone levels, which may lead to higher severity of the condition.This is important research as a study found that close to one-third of working Women with Fibroids, said they missed work because of symptoms, including heavy or prolonged menstrual bleeding, cramping and fatigue.In 1 Patient Survey, many women wanted to preserve their uterus, and younger women were often focused on preserving their fertility. I was impressed by how strongly women felt about uterine preservation, said study author Dr. Elizabeth Stewart, a professor of obstetrics and gynecology at the Mayo Clinic in Rochester, Minn. For many women, even if they don t want fertility, preservation of their uterus is an important goal. Fortunately, fibroids won t necessarily require a hysterectomy, especially if women get medical care early, she said.The 968 women surveyed were aged 29 to 59 and had reported fibroid symptoms. Fibroids often present no symptoms, but one-quarter of women with fibroids say their day-to-day life is affected by the growths.Among the other findings: 24 percent of the working women said fibroid symptoms kept them from reaching their career potential, and 41 percent of women saw two or more health care providers before getting a diagnosis.A sub-study found that black women are more likely than white women to have severe symptoms, and 32 percent of black women waited more than five years before seeking medical treatment compared to 17 percent of whites.Black women are more likely to be diagnosed with fibroids than other races. They are also more likely to diagnosed with larger more numerous fibroids, at a younger age. Ie some studies show they are often diagnosed 10-15 yrs earlier. They are more likely to have symptomatic fibroidsPsychological studiesIn a cross-sectional study of Black Women , a positive association was found between Fibroids prevalence and both the number of major life events and stress intensity.16 There was a higher Fibroid prevalence in women who felt racial discrimination in the Black Women’s Health Study (BWHS), a prospective cohort study. UF incidence was positively associated with greater levels of “everyday” racism and lifetime occurrences of major discrimination, with weaker associations found among those with higher coping skills. Exposure to plastic products, cosmetics, other chemicals including BPA Bisphenol A, consumption of soybean milk, food additives, sweetener preserved foods may be risk factors for fibroids (Environmental exposure risk of uterine leiomyoma: an epidemiologic survey). China 2013Chemicals in many Hair Beauty products including Hair Relaxers are also believed to be linked to the development of Fibroids.The majority of women with uterine fibroids will have normal pregnancy outcomes.Over 80% of fibroids observed during pregnancy remain the same size or reduce during pregnancy (Muram El Toaffe)Pregnancy rate after Myomectomy was 50-68% a Live birth rate of 57-93%. Caesarian birth was more likely after a myomectomy. Fibroids , Infertility pregnancy wastage (2000) N.Bajekal)50% of women with infertility/reproductive wastage , conceive after myomectomy. (Verkauf 1992. Vercellini 1998)Miscarriage rates are significantly reduced after Open myomectomy. If there is a previous history of recurrent miscarriage. There are no clear figures for Live Birth Rates after Hysteroscopic Myomectomies or the use of Dilation Curretage (which used to be called Blind D C or “the scrape”). It is believed that regularly removing endometrial lining can increase the risk of adhesions (scar tissue) may results in more damage so it is not encouraged if preserving fertility is the goal. There is also a high risk of complications.The UK (NICE ) Hysteroscopic Morcellation Guideline has never been audited. UK Fibroids Patients report that some have had 4-8 Hysteroscopic Morcellation procedures, each. They have developed more fibroids after treatment. This may be due to the fact that removed fibroid tissue is not always fully removed from the abdomen. Even benign fibroid tissue can reseed regrow in other parts of the womb or abdomen if left in by the Dr. It is therefore difficult therefore to confirm whether this minimal procedure is cost effective or improves quality of life, if it leads to multiple reoperations.Women with fibroids are as fertile as the general population of women ie approximately 70% of all women. The presence of fibroids did not increase the risk of pre-term birth, however, subserous and submucosal fibroids slightly increased the risk of an earlier pre-term birth. The mean time to conception was similar between women with and without uterine fibroids. African American women were more likely to have a uterine fibroid, to have more than one fibroid, and to have a larger uterine fibroid than their Caucasian counterparts.General Fibroid StudiesVitamin Dreduces the risk of fibroids. A US Womens’ study found that Only 10% of blacks 50% of white women with fibroids had sufficient levels of Vitamin D. (Halder, NIEHS Uterine Fibroid Study).In the Black Womens Health Study involving 21,885 african american women. Risk of fibroids was positively associated with years of alcohol consumption and current consumption of alcohol, particularly beer.Red Meat , particularly beef ham consumption increases the risk of fibroids. Research is undergoing to see if it may be due the chemical growth factors used in modern farming to speed up the growth of animals to bring them to the market which may be the underlying problem with some red meatEarly Life ExposuresData from 3,534 black women was analysed aged 35–59 , in the Sister Study, who self-reported information on early-life and childhood exposures. Early-onset fibroids were assessed based on self-report of a physician diagnosis of fibroids by the age of 30 years-their mothers being given a synthetic estrogen called DES or diethylstilbestrol / Stilbesterol to prevent miscarriage This site is not providing advice from a Dr. All content found on the Fibroid.Network Website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website.If you think you may have a medical emergency, call your doctor, go to the emergency department, or call emergency services immediately. We do not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be commented on. Reliance on any information provided by this site or medical professionals presenting content for publication on this site is solely at your own risk.The Site may contain health- or medical-related materials or discussions regarding sexually explicit disease states. If you find these materials offensive, you may notwant to use our Site. The Site and its Content are provided on an as is basis.Links to educational content not created by fibroid.network are taken at your own risk. Bridgette York, who is not a Dr or Healthcare Clinician is not responsible for the claims of external websites and education companiesAll Party Womens Group Survey- Informed Choice for Fibroids PatientsThe All-Party Parliamentary Group on Women’s Health is a cross-party group of MPs and Peers in the UK Parliament of Westminster. The group aims to empower women to ensure that they can make an informed choice about the best treatment for them and that they are treated with dignity and respect.The survey is available here: Click to go to the Anonymous Survey.Link: https://www.surveymonkey.co.uk/r/fibroids-informed-choice#The group has launched an inquiry into whether women are given an informed choice about the treatment options available for particular conditions. The group aims to produce a report which will assess if women are given an informed choice about treatment options and outline what further improvements might need to be made.Fibroids is a condition the group would like to shine a particular spotlight on in this report and so would like to hear from patients about their own experience of living with and accessing treatment for fibroids.We would be really grateful for your help in responding to this anonymous survey about your personal experience. Your responses will remain anonymous, but will help to ensure that women in the future are given full information about their treatment options and a fully informed choice about the treatment that suits them.If you would like any further information about the report or the group’s work more generally please contact the group secretariat by emailing appgwh@pbpoliticalconsulting.com or calling 020 7735 6963. Completing the survey, is a rare opportunity to have your say about your care. You can add , how it can be improved? Whether you feel fully informed about the many fibroid treatments available. Did you understand the treatment options and outcomes. Did you meet your treatment goals? What info would help you in your treatment decisions.PATIENT SURVEY HEREVolunteer Founder of Fibroid Network Patient Support Group  1st specialist Fibroid Support Group in the UK2000 – 17 yearshttp://www.fibroid.networkFibroid Network International  (Browser version): @fibroidinfoUK Fibroid Network Twitter (Browser version) @fibroidsupportFibroid Network Research from a Patient s Perspective  @fibroidnetworkMember of PIN : Patients Involved in NICE (National Institute for Excellence) , which gives recommendations to the NHS on current new technology from the patients perspective.Research Contributor to the NHS Heavy Menstrual Bleeding / Fibroids GuidelineWorldwide Fibroid Seminar SpeakerFibroid Research from the Patients Perspective QOLY HRQOLYFibroid Patient Quality of Life Patient Safety advisorInformed Patient Choice advocateWomen s health advocateSeminar SpeakerPersonal experience of Fibroids , successfully Treated. Continue reading Uterine Artery Embolisation of Fibroids is a treatment carried out by a Radiologist , which is minimal surgery for Fibroids. A Specialist Radiologist , uses a substance to block the blood supply to the fibroids , so that it shrinks. This is a procedure that has been available in the UK on the NHS privately. Women have experienced substantial shrinkage of their fibroids relief from symptoms such as Heavy Periods (Menorrhagia, AUB) pain. There have also been pregnancies after embolisation. Initially it was trialled on older women who didn t wish to conceive , however younger women worldwide are now using the procedure achieving pregnancy and therefore avoiding Hysterectomy (womb removal).Dr Woodruff Walker, the leading Fibroid Embolisation specialist in the UK, has informative videos  a website at http://www.fibroids.co.uk CLICK HEREView the videos here: Continue reading Femme StudyUK Clinicalrandomised trial of treating fibroids with either embolisation or myomectomy to measure the effect on quality of life among women wishing to avoid hysterectomy (womb removal) (the FEMME study)The Trial was to compare the outcomes of Myomectomy vs Embolization to find which treatment has the best effect on women’s quality of life if desired, pregnancy outcomes. This Trial is complete but it has now become apparent that the now recalled drug, Esmya, Ulipristal Acetate (From Gedeon Richter) was used in this Trial Continue reading Vitamin D FibroidsVitamin D deficiency has been identified as a Risk Factor for the development of fibroids. It has been suggested that Vitamin D therapy could be a new strategy for the prevention and/or treatment of fibroids. Or as a treatment used alongside existing strategies, to help to improve outcomes.Studies are continuing to establish whether Fibroids can be caused and treated by lifestyle and/or Diet adjustments.Uterine fibroids are the most common benign tumors affecting the health of women of reproductive age. Researchers previously underestimated the prevalence in society , of the condition. The prevalence of Uterine Fibroids is reported to be as high as 70% in Caucasian women and up to 80% of Black Women . Continue reading Do you have Fibroids and want to get Pregnant?Info about Fibroids Pregnancy FertilityFibroids do not affect your fertility. Infertility is currently defined as the inability to become pregnant, without contraception,  after regular, unprotected sex for over a year. Many women have fibroids sometimes only discover them during pregnancy, and still go on to have healthy babies. Fibroids are very common in women , between 50-80% of women will develop them by the age of 50. Some people will have tiny pea size fibroids, some can have melon size fibroids. 50% of women will have no symptoms from fibroids , irrespective of their size.There has been research on fibroids fertility, which confirms that women with fibroids are as fertile as the average woman of their age in society. After myomectomy , the chances of pregnancy for a woman under 35 is up to 75% . Women s ability to maintain a pregnancy (if they had , had problems before) increased after Myomectomy.FORESIGHT CHARITY Online also provides information on Preconception Health Programmes which assists with information on improving overall health before trying for a baby. With up to date research on Endocrine Disruptors, which may affect Fertility.The first part of my fibroid story in a BBC article online I had an 11lb fibroid removed successfully by Open myomectomy (Laparotomy) , Click here to Read my BBC News item online. I was  a patient Representative on the 2007 CG44 Heavy Menstrual Bleeding Guideline for NICE (National Institute of Clinical Excellence) which produces the Guidelines for the UK NHS, so that we could finally get access to more effective treatments for this condition. We were contacted by 1,000 s of women who suffered from Heavy Menstrual Bleeding Fibroids.  ,  I participated in creating a UK Guideline for Drs Patients to help people who suffered from both these conditions. . Thank you to all the Members of Parliament Womens Organisations who supported us , to help women get Informed, Patient Choice .After this article was published I went on to have twins, without IVF.Bridgette York,Fibroid Networkhttp://www.fibroid.network (formerly fibroidnetworkonline.com , please update your links)Twitter: Worldwide Fibroid Network @fibroidinfoUK Fibroid Network @fibroidsupportFibroids are benign (non-cancerous) tumours. They occur in the uterus (womb). The womb is a hollow, pear shaped muscle.Women worldwide have been faced with the unexpected news that they have fibroids. Most women have never heard of them prior to their diagnosis. For a woman the idea of a tumour occupying their womb is frightening especially in the absence of information about this benign problem. Some women feel a mixture of emotions, they are sometimes scared, sometimes embarrassed to discuss it with friends family. Unfortunately the lack of information leads women to accept a hysterectomy (removal of the womb) for this treatable condition.For reasons that are currently being researched, a single muscle cell in the uterus may begin to grow multiply rapidly. The resulting tumour is called a fibroid. (The word ‘tumour’ often evokes fear because it is commonly associated with cancer, but ‘tumour’ in medical terminology simply means new growth or overgrowth of cells). The medical term for them is Leiomyomata (Leio= smooth myo=muscle). They are also called uterine myomas, fibromyomas or leiomyomas. Their size can vary. Some are microscopic or the same size as a pea and some can be as big as a melon. Fibroids can increase in size, decrease in size or even go away with time. They can occur anywhere in the womb and are named according to where they grow: Continue reading

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