Raising awareness of uterine fibroids: a collective responsibility

By Zal Press and Holly Bridges

It is Not normal to have pain during sexEight thousand strong and counting. The voices of the women (and a few supportive men) of this organically driven nationwide collaborative are beginning to make inroads after a long two years. They are heard in traditional media, in online social media conversations, and in live events such as the second national forum in Toronto recently.

The biggest newspapers in the country have covered the issue. The late Barbara Turnbull, the Toronto Star feature health writer, brought attention to new treatments for fibroids.  Other Star writers highlighted the stories of personal suffering and courage of women who face limited choices in treatment and long, painful journeys to diagnosis. And The National Post ran a full-page feature on fibroids in a special supplement devoted to women’s health.

Starting up conversations

The strength of this collaborative, however, is its ability to turn online conversations into a support system that provides an easy way for sharing stories and information. Women suffer economic and social burdens, often hiding their condition from employers and families. In social media they have found solace in the experience of others, and gained knowledge of new treatment options that empowered them in their relationships with their physicians.

Despite these successes, the vast majority of women who suffer from fibroids, and that could be as many as 20% of the female population, are still unaware of all of the treatment options available, where to find support, and how to break out of the stigma associated with bleeding disorders.

Talk is cheap but not easy

For some women, talking about painful, heavy periods is still shrouded in shame and secrecy, which prevents the kind of awareness and societal conversation that is necessary to affect change.

“I’m one of those people that don’t necessarily like to talk about how I’m feeling,” said Carmen Wyton of the Alberta Women’s Health Coalition, who spoke at the forum. “I have had some significant health challenges in my life and chosen to keep them to myself so for me to talk about things like menstrual health and sexuality [is foreign] because I was brought up in a world where you kept that to yourself.

“It is important that we break that paradigm and get more comfortable with telling our stories.”

Professionally unaware

Women aren’t alone when it comes to lack of awareness of support groups, information and understanding the latest treatment options for fibroids.

“Even since our last meeting two years ago, many of the gynaecologists we invited to the forum were unaware of the fibroid group and the fact it has grown to over 8,000 members,” said Michael Houlahan of Sand Pile Inc. who organized the forum and specializes in healthcare stakeholder strategies.

And surprisingly, the path to greater awareness of treatment options remains elusive even for some gynaecologists. Physicians face obstacles to providing the best, and most appropriate care for a patient. The complexities of the healthcare system, time constraints, and reliance on the status quo continue to stand in the way of greater competency in the latest surgical techniques and medical management strategies.

“Getting the best evidence to busy clinicians is a difficult and challenging process because in talking to various doctors they may approach a problem based on how they were trained 20 years ago,” said Dr. Nicholas Leyland, Professor and Chair, Department of Obstetrics and Gynaecology at the Michael G. DeGroote School of Medicine at McMaster University in Hamilton, Ont.

So where does this leave women?

Be Very vocal with the medical communityIt’s not really a gloomy picture. On the contrary. The UF Collaborative Forum set new standards and opened a huge new door in the relationship between women and the professionals who treat them. As more gynaecologists become aware of these groups, the more they are directing patients for support.

New, allied initiatives have also emerged. In Alberta, Carmen Wyton’s (@cawyton) Women’s Health Coalition  is gathering steam and bringing attention to the entire issue of women’s health and the lack of focus by the healthcare system and society at large.

The evidence is clear that more informed and activated patients have better health outcomes. In the case of the treatment of fibroids, this applies equally to the more informed healthcare professionals. Awareness is a two-edged commitment and must keep growing if greater numbers of women beyond the 8,000 are to reap the benefits of making an informed choice in treating a condition that affects so many and has been cloaked in silence for too long.