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?

Women need to look for ways to seek advice soonerThe 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 moral or financial, to gain credibility to bring about the necessary changes.

These are lofty goals yet they are achievable.

Caution: Solutions ahead

As the saying goes, “If you don’t know where you’re going, any road will do.”

This means the women who gathered in Toronto are at a pivotal point and must decide whether to work together or separately to formalize the ever-growing patient movement for women with menstrual disorders such as:

Women should be able to access the same standard of care

  • Fibroids;
  • Asherman’s Syndrome (uterine scar tissue that can cause infertility);
  • Polyps;
  • Cysts;
  • Adenomyosis (when endometrial tissue, which normally lines the uterus, occurs within, and grows into, the muscular wall of the uterus);
  • Endometriosis (when endometrial tissue grows outside the uterus i.e. the ovaries, bowels and sometimes even the brain), and;
  • Heavy Menstrual Bleeding (the new accepted medical term for heavy periods caused by a number of conditions)

Stakeholder alert

However this patient movement evolves, and whether it evolves into one or several non-profits or social enterprises, one thing is clear.

There are multiple groups with an interest in women’s health that are perfectly positioned to align themselves with the cause, such as:

  • The Society of Obstetricians and Gynecologists of Canada;
  • Canadian Foundation for Women’s Health (SOGC’s non-profit organization)
  • The Society of Minimally Invasive Gynecology;
  • The Federation of Medical Women of Canada (the voice of female doctors in Canada; we need to hear more from them on menstrual disorders);
  • The Endometriosis Network of Canada;
  • Ovarian Cancer Canada;
  • Infertility Awareness of Canada.

Call to action

Is it time to stop admiring the problem of fibroids and other menstrual disorders and get down to business?


How the future shakes out is up to the thought leaders who have gathered so far.

How can you help?

  • Share this blog;
  • Contact:
    • Patricia Lee of the Canadian Women with Fibroids on Facebook,
    • Holly Bridges of The UnHysterectomy (@unhysterectomy)
    • Carmen Wyton of the Alberta Women’s Health Coalition (@cawyton)
  • Share your thoughts, concerns and ideas.

For women, the backbone of our society, nothing is more important than their health.  A happy, healthy woman means a happy, healthy family.

So whether you join this burgeoning patient movement or cheer it on from the sidelines do this one thing moving forward: cast a stone across the waters and create many ripples.

Every voice counts.

Subscribe to our newsletter for regular updates on the UF Collaborative movement.

Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges

My personal reason for being here is for AdvocacyGiven 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 of fibroid sufferers and survivors in Toronto was proof positive that women are feeling empowered to advocate for themselves and the societal change that is necessary to give women better treatment outcomes.

Consider the backstory behind this growing advocacy:

  • It's about putting pressure on systemsLeading up to the most recent gathering in Toronto, members of the group continually communicated among themselves and with their own networks via social media, e-mail and phone to share their successes and their challenges.
  • The virtual group is growing by leaps and bounds every day.
  • Group members have been submitting impact statements and feedback to Health Canada on the need for approval of new drugs for the treatment of fibroids.
  • Local and national media outlets include members of the group in news stories relating to menstruation and menstrual disorders such as fibroids and endometriosis.
  • Some members have tackled candidates in their respective provincial elections asking what could be done to increase access and reduce wait times for treatment.
  • The June meeting in Toronto was the second of its kind where women from across Canada came together to galvanize their shared experiences and shape it into a growing patient movement.
  • For the first time ever there were doctors in the room; a growing group of new-school gynaecologists who are pushing for change as much as women are.
  • Those doctors encouraged members to continue advocating for better care for themselves and better care from our provincial health care systems.

In order to grow this patient movement into something truly powerful, an entity that can advocate for change at the societal level, the group has pretty much hit a fork in the road: become more organized to take their advocacy to the next level or take a pause.

On that point, Carmen Wyton offered some sage advice.

“Public policy efforts can take many years to realize wholesale change and the players will likely change through time,” says Carmen. “Small wins along the way will provide energy, demonstrate progress, and can create policy and program adjustments that add value.

“Stay true to your purpose, find a way to overcome challenges and surround yourself with people that care as much as you do and anything is possible.”

Watch Carmen Wyton’s Public Policy 101 … or how to turn patient advocacy into action.

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

Things that are changing in caring for FibroidsWhile 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 a hysterectomy pays yet take twice or three times as long).

Dr. Nicholas Leyland, MD, Ob-Gyn, a long-time champion for women’s health and currently a Professor and Chair Department of Obstetrics and Gynaecology at the Michael G. DeGroote School of Medicine McMaster University, spoke of a politicized health care system.

“I can tell you that women’s’ health is just not on the radar,” said Dr. Leyland. “It’s not even part of the conversation and you can look at the quality of life data and the impact on the quality of women’s lives and it is at least as significant as the disorders that they have chosen to prioritize so ask yourself ‘Why is that?’”

A system, Dr. Leyland said, that has prioritized cancer, cardiac care, diagnostic imaging, joint replacement and sight replacement and neglected the needs of women with debilitating fibroids.

A study by the Johns Hopkins Bloomberg School of Public Health on the quality of life burden facing women afflicted with pelvic pain and Heavy Menstrual Bleeding (HMB) found that women who suffer from serious, sometimes life-threatening HMB have the same quality of life and level of function as heart attack and stroke victims entering rehabilitation.

We have to think of a different way to influence changeYet these women are not off work in treatment, or in hospital. They are working full-time, running kids to soccer, doing groceries, etc, all while struggling against the exhaustion and crippling pain that are the signposts of this condition.

Dr. Leyland and other gynaecologists who specialize in less invasive, less risky and less painful treatment options (everything from medication to keyhole surgery), are working hard to make these options the gold standard for women.

  • They have released new guidelines for the treatment of uterine fibroids which, for the first time, include non-surgical, medical management treatment options. The new guidelines can be found on the Society of Obstetricians and Gynaecologists website.
  • They are training new gynaecologists to perform less invasive surgeries.
  • They have developed an index called “technicity,” a system to monitor how many Canadian hospitals are performing less invasive hysterectomies (keyhole surgery versus open surgery).
  • And, they have formed a new society called the Society of Minimally Invasive Gynaecology.

So while their work is helping women with fibroids, there is still much work to do.

As Dr. Leyland suggested:

  • More gynaecologists need to adopt patient-centred care and follow these new fibroid treatment guidelines, which recommend hysterectomy as a last, not first, resort.
  • More patients need to understand the options contained in the guidelines.
  • Women need to pressure politicians to make women’s health a priority.

While the CMA has a big challenge ahead of it, dynamic leadership can be found in specialty practice that emulates the commitment to transformation the CMA roadmap heralds.

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.