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.

Blood sisters:
fighting fibroids as one

By Holly Bridges and Zal Press

Why is it that suffering brings people together?

Is it a sense of duty, compassion or something more primal?

When someone close to us is critically ill, or passes away, our immediate instinct is to gather together. To connect. To share. To laugh and to cry.

First UF GatheringFibroid community is growing

The recent Uterine Fibroid Collaborative Forum held in Toronto (the second in two years), where women with fibroids and expert gynecologists gathered together for the first time, was a salve of sorts -a grassroots coming together of women whose lives are at the mercy of their own bodies, disabled by monthly bloodbaths that leave women feeling desperate, exhausted and alone.

In other words, the collective suffering of these women, and their growing frustration over a lack of access to timely and effective treatment options, has created a new and growing community of Canadian women who are desperate for change.

Their mantra is clear

Our suffering is real, we deserve better and we are stronger as a community.

We are tired of waiting years for proper diagnosis and treatment.https://youtu.be/

We are tired of a health care system that seems to put us last.

We are tired of being tired.

Whether through social media, word of mouth or a gentle nudge to join from a core group of women who are leading the charge, the size of the community of women with fibroids is growing, mostly organically, and remains mostly virtual.

Size of community

CANFib.ca website visualizationThe community is pushing 8,000 so far, with more than 5,200 members and growing of Canadian Women with Fibroids (CanFIB) on Facebook (founded by fibroid survivor Pat Lee), almost 1,500 on Hysterectomy Alternatives on Facebook (started by UnHysterectomy author and fibroid survivor Holly Bridges) and several more belonging to the new Alberta Women’s Health Coalition (co-founded by Carmen Wyton, who is also the chair of the Alberta Premier’s Council of the Status of Persons with Disabilities).

“If there’s one thing I find on the Facebook group, it’s women come for the first time and say ‘Thank God I found a place where somebody understands,” said Pat Lee.

Not formally organized

The fact that this fibroid fighters community remains largely informal, without any real structure, speaks to its very raison d’être.

For the most part, members are in the prime of their lives, in their 20s, 30s, 40s and 50s, when they need their energy the most. Their schedules are packed with responsibility, working, raising children, volunteering, coaching soccer, car-pooling, caring for aging parents or approaching menopause.

The last thing they want is more responsibility.

Bit by bit by bit

Yet the fibroid forum was a big step towards formalizing a Canadian fibroid community, one that continues to offer women a safe place to meet, share their common experiences, learn and vent.

“Communities help people evolve and gain new perceptions, empowerment and strength,” said Pat.

In fact, communities give us a sense of identity; they help us understand who we are and what we are experiencing so we can feel part of something larger than ourselves. And in doing so, we can build momentum towards achieving change.

“Lived experience is the most powerful place from which to speak,” said Mercy , a founding member of the forum.  “No one can deny your story, so understanding it and communicating as completely and effectively as you can, in the most compelling way possible, helps you and others to get to that big picture idea of creating a society that works for everyone in the best possible way.”

The trick lies in patients and physicians working together to build a better, more accessible health care system for all.