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

My uterus gets no respect: the UF movement gathers steam

By Holly Bridges and Zal Press

In the second gathering of Canadian women who suffer from uterine fibroid tumours, patients and physicians alike rolled up their sleeves to share and learn how this group is beginning to influence better health outcomes and improved quality of life for the one in four Canadian women suffering from this condition.

The day was recorded on video and graphic illustrations that captured the emotions and intensity of the day.

The UF Collaborative Forum in Toronto was the first time that women and gynecologists came together to share their different perspectives on the gaps in health care that often leave women to bleed with limited choices of treatment. This groundbreaking event began the vital conversation between healthcare professionals and patients with the goal to establish a unique collaboration that tackles the critical issues affecting treatment and care.

The women who attended represented all stages of the uterine fibroid fight, including those facing surgery, those on the brink of emotional and physical collapse from years of suffering from painful and often uncontrollable bleeding, and those who have emerged victorious and symptom-free after hysterectomy or other treatments.

In our original series of stories Patient Commando highlighted the many gaps in the treatment [...] continue the story

An Open Letter to Minister Lisa Raitt

Dear Minister Raitt,

Please accept my applause and congratulations for the courageous and open conversation you had on Canada AM about the details of your health issues.

Its estimated that as many as 20% of women suffer from fibroids. Your experience reflects that of many women – that “sometimes options are not presented” and “I didn’t know any of this until it was too late”. And as a consequence so many women suffer in silence and unnecessarily endure extreme treatments.

In case you don’t know, sharing your story is a breakthrough in leadership echelons for this important conversation. You are correct – there’s a lot of stigma attached to speaking about women’s conditions publicly. Usually its in whispers, in corners, or simply with tears of isolation. Women across the country have been addressing these gaps in treatment, diagnosis, and the social and economic impact by self organizing and sharing their stories.

Your leadership role model will empower women to be assertive voices and participants in their healthcare so that they can act, and get appropriate treatment, before its too late. We have been documenting the rise of women’s voices on the issue of fibroids specifically, and bleeding disorders in general and you can follow [...] continue the story

Birth of a New Patient Movement

How do patient advocacy groups get started? What motivates people to get engaged and involved? How do they become enabled and empowered?

A milestone event was held on July 20th, 2013 in Toronto to highlight the plight of women suffering from uterine fibroids and the associated heavy menstrual bleeding.

Women from across Canada who suffer from uterine fibroids came together to meet, share and brainstorm to create the first authentic patient voice in Canada regarding this important area of women’s health.

The significance of this event lies in the impact of this condition on the whole patient experience from living with the disease, diagnosis, treatment to follow up. Uterine fibroids account for more hysterectomies in Canada than any other condition. According to the National Uterine Fibroids Foundation (NUFF) in the U.S., up to 80 percent of all women have uterine fibroids. While the majority never have symptoms, one in four ends up with symptoms severe enough to require treatment and the experience can be horrifying.

In Canada, there is no organization such as NUFF, no unified or organized patient voice, to advocate for timely and appropriate care and treatment of women who have suffered unbelievable pain, discomfort, embarrassment, humiliation and anger due to uterine [...] continue the story