MISSION STATEMENT

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


Have your Say- UK Parliamentary Group Fibroid Patient Survey on Informed Choice

Fibroid Network UK Patient Survey

All Party Womens Group Survey- Informed Choice for Fibroids Patients

The 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 HERE

 


Bridgette York – Founder of the Fibroid Network Support Group

Volunteer & Founder of Fibroid Network Patient Support Group – 1st specialist Fibroid Support Group in the UK
2000 – 15 years
http:\\www.fibroid.network
Fibroid Network International  (Browser version): @fibroidinfo
UK Fibroid Network Twitter (Browser version) @fibroidsupport

Member of PIN Patient 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 Guideline
Worldwide Fibroid Seminar Speaker
Fibroid Research from the Patients Perspective QOLY HRQOLY
Fibroid Patient Quality of Life & Patient Safety advisor
Informed Patient Choice advocate
Women’s health advocateSeminar Speaker
Personal experience of Fibroids , successfully Treated. Continue reading


Summary of Fibroid Research findings for Women with Fibroids and Black Women related Health Issues

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 Authors grew 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. This article is an overview of Fibroid Research in relation to Diet, Treatments, Black women & fibroids, statistics, fertility and social issues involving fibroids. Continue reading


Top UK Fibroid Doctors

The Daily Mail Health reported on the UK’s Top Fibroid Doctors CLICK HERE  Fibroids Whos safest pair hands We asked specialists themselves


Uterine Artery Embolisation, UAE for Fibroids Video

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 HERE

View the videos here:

Continue reading


Femme Fibroid Trial UK Clinical Trial comparing Myomectomy with Embolisation & Fertility


Vitamin D Therapy for Fibroids

Vitamin D & Fibroids

Vitamin 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


Fibroids & Fertility

Do you have Fibroids and want to get Pregnant?

Info about Fibroids Pregnancy Fertility
Fibroids 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.


Twins after Myomectomy Update

The first part of my fibroid story in a BBC article online “I had an 11lb fibroid removed successfully” by myomectomy , Click here to Read my BBC News item online. I was  a patient Representative on the 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 of my Fellow Guideline Development Panel members for this fantastic review of  current  treatments. 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 Network

http://www.fibroid.network (formerly fibroidnetworkonline.com , please update your links)

Twitter: Worldwide Fibroid Network @fibroidinfo

UK Fibroid Network @fibroidsupport