Formalizing the menstrual disorder patient movement: is it possible?

By Zal Press and Holly Bridges

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa These words by Mother Teresa are a motivational mantra of sorts for Canadian women who have come to a fork in the road in their fight against fibroids and the debilitating heavy menstrual bleeding they cause.

What is the future of the movement? Where does it go from here after two national gatherings?  Is it time to form a non-profit foundation or social enterprise?

The movement to create awareness of fibroids and heavy periods in Canada is now some 8,000 strong, between Canadian Women with Fibroids, The UnHysterectomy and the Alberta Women’s Health Coalition. While these groups are working hard to raise awareness and bring hope, it could be argued that their work has a long way to go before becoming a household word. To-do list The leaders of these groups all agreed at their most recent gathering in Toronto that something must be done:

To increase awareness of menstrual disorders; To work with the medical community, policy makers and politicians to change the way our society perceives and treats menstrual disorders such as fibroids; To increase access to better, faster, more equitable treatment in all regions of Canada;

To advocate for and support women who are suffering in silence, and; To formalize the patient movement to generate more support, whether [...] continue the story

Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges Given the complex and frustrating journey so many women with fibroids must endure, what can women do to take more command of the journey and get better outcomes for themselves and others? We have heard how greater awareness of treatment options can empower women to advocate for themselves with their physicians. We have even heard from physicians themselves encouraging women to do so.

This kind of self-advocacy can make a huge difference on an individual level. But to drive real change in practice, the collective voice of women across the country needs to be leveraged. System change and health reform that will impact the lives of millions of women, not just one, is the result of collective advocacy. And that is what we’ve come to understand as a movement.

“You can spend a lot of time admiring a problem but no change will happen until you push on the systems that are causing the problem or the barriers that are preventing you from moving in new directions,” said Carmen Wyton, a social innovation champion, chair of the (Alberta) Premier’s Council on the Status of Persons with Disabilities and head of a new Alberta Women’s Health Coalition.

The recent gathering [...] continue the story

Physician heal thy profession: trailblazing fibroid docs shifting treatment paradigm

By Holly Bridges and Zal Press In its 2014 roadmap for the future, the Canadian Medical Association declared “its readiness to take a leadership position in confronting the hard choices required to make health care work better for Canadians”.

Part of the solution, promised the CMA, was its framework for transformation that included:

Building a culture of patient-centred care Enhancing patient access along the continuum of care Recruiting more health care providers trained in high tech medicine

While the CMA has a long way to go before all 72,000 of its members adopt patient-centred care to reduce wait times and fast-track better outcomes, there are pockets of practitioners who are demonstrating real leadership.

The recent Uterine Fibroid Collaborative Forum in Toronto, which saw both patients and physicians come together for the first time, offered a glimpse of this new patient-centred paradigm.

Some trailblazing Canadian gynaecologists who are on the front lines of treating women with fibroids surrendered a precious Saturday (from a workweek that is often 80 to 100 hours) to update patients on new treatment options.

Many of the gynaecologists who attended, such as Dr. Nicholas Leyland, Dr. Grace Liu, Dr. Ally Murji and even a young medical student, are true visionaries at the forefront of change. These surgeons are improving the lives of Canadian women yet often at their own financial peril (gynaecologists who practice minimally invasive gynaecology actually lose money because newer high tech alternatives pay half what [...] continue the story

Raising awareness of uterine fibroids: a collective responsibility

By Zal Press and Holly Bridges Eight 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, [...] continue the story

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. Fibroid 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 [...] continue the story