The Fibroid and Endometriosis Information Gap

The Fibroid and Endometriosis Information Gap

The Fibroid and Endometriosis Information Gap 1131 439

The Fibroid and Endometriosis Information Gap

It’s a situation too many women have experienced. You go to a general practitioner or a gynecologist with complaints of heavy menstrual bleeding, abdominal pain or pelvic pressure. You get pushed off with statements like, “That’s part of being a woman” or labeled with vague diagnosis like irritable bowel syndrome. If you’re taken seriously and your gynecologist knows a bit more, he or she may actually diagnose uterine fibroids or endometriosis… and then tell you your only solution is to get a hysterectomy. This whole process is one big medical fail… that happens time and time again.

Medical Professionals Don’t Always Know

Why does this happen? Why aren’t you diagnosed accurately? The sad but true answer is that many general practitioners don’t always have accurate, up-to-date information on gynecological conditions like uterine fibroids and endometriosis. One woman interviewed by the All-Party Parliamentary Group on Women’s Health (WHAPPG) in the UK said her “GP told me firmly that ‘fibroids don’t cause any problems, and there’s nothing you can do about them anyway.’”

She’s not alone. WHAPPG found that 40% of women with endometriosis in the UK needed 10 GP appointments or more before being referred and 39% of women sought a second opinion.

If medical professionals aren’t familiar with these types of conditions, this situation needs to change. More education needs to be provided to medical professionals on fibroids, and other gynaecological conditions such as endometriosis, including their symptoms and respective treatments. As one of their primary recommendations, WHAPPG said that “Education modules should be included for General Practitioners and OBGYNs at college level for recognizing and treating fibroids and endometriosis.”

Medical Professionals Don’t Always Provide Information

Even if the medical professional knows enough about fibroids to diagnose a patient, he or she still may not be able to provide enough information in a helpful and understandable format. Only 16% of NHS Trusts in the UK provide women with written information about heavy menstrual bleeding and pelvic pain. Without printed material they can take home with them, it’s very easy to lose track of all the condition details and treatment options… if they are informed about all of them in the first place. However, too often, women are not provided with all the relevant information to allow them to have personal input into their treatment plans.

In a recent survey carried out by WHAPPG, whilst 70% of women surveyed had been told about hysterectomy as a potential treatment for fibroids, only 47% had been told about other potential procedures such as a myomectomy, and only 54% had been told about uterine fibroid embolization. Very few had been informed about the latest medical, non-invasive and non-hormonal options for treatment.

With hysterectomy being presented as the first (and often only) option for treatment, it is not surprising that approximately 62% of women were not satisfied with the information that they received about the various treatment options.

Do Your Own ResearchThe Fibroid and Endometriosis Information Gap

So where did these women go to look for information on treatment options?

Of those who answered the WHAPPG’s survey, 67% of women said they first found information out about uterine fibroids from the internet. This is a sad statement, given that although the information on the internet can be great for brainstorming issues before going to a medical professional or for getting a fuller picture of a condition after diagnosis, it can also be extremely misguiding and lacking valid scientific backup.

Solving the Issue

Women deserve to be diagnosed – not dismissed – by medical professionals. Especially with conditions as common as uterine fibroids or endometriosis, this is a pressing matter that needs to be dealt with sooner rather than later.

We applaud WHAPPG’s efforts in the UK to push for better training for physicians, a defined procedure for diagnosis and treatment, and comprehensive written information for patients.

We would like to see that awareness and information availability become a reality in healthcare systems worldwide.