Uterine Fibroids Collaborative Forum: 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?

Yes.

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.

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