Women from across Canada, from Vancouver, B.C., to Halifax, N.S., attended a one-day forum at the Centre for Social Innovation in Toronto, Ont., yesterday, July 20, 2013, to discuss their common concerns and shared frustrations over living with uterine fibroid tumours (the most common cause of Canada’s $192 million annual hysterectomy tab) and trying to find timely, appropriate and consistent care to end their agony and suffering.
The day was historic for many reasons:
- It was the first gathering in Canadian history of women who suffer from fibroids.
- We now have a group of passionate, committed women who are willing to take the next step in pushing for awareness and looking to build a powerful community so all women can find and support each other.
- The day resulted in a shared committment that something must be done to increase awareness of menstrual disorders.
Most of the women there, the majority of whom suffer from uterine fibroids (non-cancerous tumours that grow in one in four women, from the size of a pea to a football) reported feeling shut out by a medical system that seems to care more about maintaining the status quo than helping women ease their symptoms in the least invasive, least risky, least painful, least expensive manner.
Most felt their family doctors and gynecologists diminished their symptoms, refused to refer them to more specialized gynecological surgeons or deliberately withheld information about the variety of treatment options available nowadays, from taking over the counter painkillers all the way to hysterectomy.
All the women, except for one from Alberta, reported feeling pressured into having a hysterectomy, including Lori from Toronto who finally had 55 fibroids removed after seeing 10 different doctors.
“Every specialist that I saw in Toronto dug in their heels and looked at me like I had three heads [for wanting to find something less invasive]. They dismissed me, ridiculed me (I can’t imagine what you’re reading!!!), and rebutted me with ridiculous explanations as to why a hysterectomy was my ONLY option. One elderly, seasoned, male gynecologist had the audacity to say “Your uterus is like a rotten baked potato. Should we scrape out the rotten parts or just throw the whole potato out?”
Through an unrestricted grant from a pharmaceutical company and facilitated by Michael Houlahan of Sandpile Healthcare Stakeholder Strategy Inc., the forum brought Canadian fibroid sufferers from different provinces together to share their common experiences and frustrations and to discuss ways to formalize advocacy for women with menstrual disorders in Canada.
I had the pleasure of co-chairing the day with Patricia Lee, founder of Canadian Women with Fibroids, a Facebook community devoted to giving Canadian women a place to come together to share their common experiences with fibroids.
The day began with presentations about the state of affairs of fibroid patient advocacy in Canada which, excluding yours truly and Patricia’s Facebook page, is pretty much non-existent.
Even the Society of Obstetricians and Gynecologists (SOGC), nor its charitable arm, the Canadian Women’s Health Foundation, has addressed the issue with women through any form of public or communications outreach, action, public information or a dedicated website despite having websites about other conditions.
What does that mean?
It means there is no formal organization in Canada that speaks for women who suffer from uterine fibroids, or menstrual disorders at large. No way to amplify the patient voice. There are groups devoted to other conditions such as endometriosis and infertility, however, there is nothing for fibroids or menstrual disorders at large yet fibroids are the number one reason for hysterectomy in Canada, accounting for more hysterectomies than all other causes put together, including cancer.
This gap in support leaves the door wide open for groups such as The UnHysterectomy and Canadian Women with Fibroids to become more organized and lobby for change.
One of the speakers, Zal Press, who heads up Patient Commando, described the beauty of the seedling we had created this way:
“It is great to have a patient voice but just because it is loud it may not always be heard with as much impact unless it is harmonious, unified.”
The gathering yesterday in Toronto reminded me once again that we have a responsibility, as small an initial group as we are, to speak for the thousands of Canadian women who have no voice currently … who are up to their knuckles in blood clots 24/7, struggling with life-threatening anemia and exhaustion, calling in sick five days a month, or facing hysterectomy because they are “done”.
As I mentioned earlier, our gathering yesterday was the first time in Canadian history that any group of women with fibroids (some of the women also have endometriosis) have gathered in the same place to share their stories, open their hearts about what it’s like to live with these terrible tumours growing inside their bellies plaguing their well-being, or even in some cases, preventing them from getting pregnant, and generally talk about how we can make things better.
Here are 10 things I took away from the day:
- Menstruation is still taboo in our society and no one wants to talk about periods, heavy periods or really, really heavy periods or the hell and heartache they cause one in four women. Erectile dysfunction and bladder control are now being advertised on mainstream TV, but abnormally heavy periods? No way.
- Most women with fibroids, and the associated monthly bloodbaths that leave them doubled over in pain every month, passing clots the size of chicken fingers, think they’re alone and that no one else could possibly be going through the hell that they are. This is due to a lack of public awareness or communication by the medical community about the disease.
- There is no patient organization in Canada devoted to fibroids such as cancer, diabetes, heart disease and the like, yet we have tens of thousands of women out there risking their lives every day due to life-threatening hemoglobin levels from so much lost blood, not to mention the mental, emotional, sexual and financial toll fibroids and other menstrual disorders take on women.
- The Canadian Society of Obstetricians and Gynecologists has not produced patient material on fibroids and heavy menstrual bleeding in the same way it has for other conditions. There is no effort being made by the leading gynecological professional society in Canada to provide women with access to timely, effective, medically up-to-date and accurate information about fibroids, its symptoms and side effects, treatment options and advice for seeking help. My book, blog and website has more information about fibroids than SOGC has produced and I am not a doctor! Author’s note: Even though the SOGC routinely sends out news releases announcing new treatment guidelines for various gynecological conditions (I know because I’m on their subscription list), the society has not issued a news release to the media about its new treatment guidelines for the treatment of abnormal uterine bleeding, which came out in May! I have made repeated inquiries to SOGC as to when such a news release will be put out, and I have yet to receive a date. You can download the guidelines here. These guidelines have not been updated since 2001 and Canadian family doctors, gynecologists and women simply must be made aware. Why the delay? Why the delay in sending out a news release?
- The issue of fibroids, heavy menstrual bleeding, pelvic pain, anemia, fatigue, cognitive dysfunction, sexual dysfunction, mood disorders, infertility and extreme blood loss is not being addressed SOGC via any coordinated communications with women directly. SOGC has created websites devoted to Endometriosis, HPV, Menopause, Women’s Sexual Health and International Women’s Health but not Fibroids or Heavy Menstrual Bleeding! Imagine, fibroids are the leading cause of hysterectomy in Canada, which in turn is the number one elective, major surgery for Canadian women, and SOGC, has yet to create a website or patient brochure on the subject. Author’s note: I have asked no less than three times for a meeting with SOGC over the past three years to discuss working with
doctors to create such a site for women with no response. I have written two letters and several e-mails to offer my writing and consulting services, working in concert with gynecologists to develop such a site, but have never heard back. I would like to meet with SOGC executives to offer my services to create such a website and patient brochure for doctors’ offices and drug stores nationally.
- Who you see is what you get. As I say in my book, unfortunately for Canadian women, where you live and who you have as a gynecologist, governs the type of treatment you receive. Unlike standardized treatment protocols for cancer, heart disease and diabetes, medicine is still grappling in 2013 with how to treat heavy periods (perhaps the new guidelines above will help). Women shared stories yesterday that would have made you think they live in different countries, not different provinces. Each woman who stood up and shared her story told a completely different story as to how her symptoms were regarded, the treatment path she was given, how she was handled and what she was told would work. It’s simply unacceptable that there should be such gaps in treatment that one woman waits 10 years for diagnosis while another gets diagnosed right away.
- Dr. Ego will see you now. A lot of women felt yesterday that their doctor’s egos were preventing them from really hearing what their patients were trying to say. We heard that repeatedly from women whose family doctors or gynecologists refused to refer them to specialists who could solve their pain and bleeding without a hysterectomy. Why is there such inconsistency in referral protocols? Is it not unethical for a doctor to withhold such information? Whose interests are the doctors serving?
- The time has come to make some noise. By the end of the day, it became obvious to all of us that something has to change. Although hysterectomy rates are dropping in Canada, and although women are receiving wonderful, amazing care from some of their gynecologists (one of our gals shared a beautiful story about how her Edmonton gynecologist really listened to her every step of the way and actually wanted her to try not to have a hysterectomy, but after five years of suffering and trying everything possible, she was done and demanded a hysterectomy. She is happy as a clam with her decision and is now symptom-free I am happy to report), the fact is, there is an inconsistency of care in this country that is denying women a level playing field. Women should not have to devise their own treatment plans as a matter of course because their doctors have not provided them with all the options. The options should be explained up front from the beginning and the woman and her doctor should work together to map out a strategy.
- Women are feeling empowered after yesterday. Perhaps the best way I can explain this is to share this e-mail my co-chair and I received from Angela this morning thanking us for the forum. She has had fibroids for a while, was able to conceive and give birth to her first son but now is facing some fertility issues trying for her second. ”I just wanted to say how happy I was to meet both of you at the meeting yesterday. I was very inspired. I had a long talk with my husband about our future and I got a lot of insights about his feelings which were truly enlightening. I could hardly sleep, thinking of all that could be done. I spoke to my sister this morning, who has also been suffering with fibroids for the past 20 years. She is looking into hysterectomy but she is afraid of the time of recovery because she is the main caregiver for my mother who suffers from Alzheimer’s. She is constantly worried of what would happen to my mom if she has to be out of commission for six weeks. Thanks to you guys, I am now aware of much less invasive procedures where the recovery time would be much shorter. She had no idea either. What a blessing to have met you and now to be able to pass on this gospel! Now the task is to find a doctor in Quebec who can perform this procedure. Oy vey!”
- The journey of healing is long, filled with twists and turns, with no guarantees, but we must take it together. Every woman who shared her story had different symptoms, different diagnoses, different conversations with her doctor, different treatment options, different outcomes and different thoughts about where to go from here.
Finding solutions will require a collective effort on the part of everyone who has a stake in the outcome:
- Family doctors
- Professional medical societies
- Nurse practitioners
- Medical schools
- Medical students
- Hospital administrators who hold the pursestrings for all surgeries
- Provincial health policy makers
- Industry (pharmaceutical companies, surgical device companies)
- Other patient groups that are aligned
Where do we go from here?
As I have said from the beginning, the quality of a woman’s care should not depend on the quality or quantity of her own research. Women deserve to be treated equitably using the same standards of care from coast to coast, which is why I again call upon SOGC to send out a news release about their new guidelines and create a patient website to house these guidelines, with an appropriate marketing and communications plan to promote them among their customers – women.
No woman should have to suffer in silence from reproductive health disorders in 2013 when medical, surgical and technological breakthroughs are making consistent early diagnosis, intervention, treatment and recovery faster and more accessible than ever. We heard this theme throughout the day.
Just as doctors have an ethical and moral responsibility to disclose the full range of risks and benefits to all treatment options to women with breast cancer, diabetes, high cholesterol and blood pressure, multiple sclerosis and other diseases, they have an equal, if not greater responsibility, to disclose treatment options in equal measure to women of reproductive age who suffer from one of the most under-reported, misunderstood disorders in existence today, that of pelvic pain and heavy menstrual bleeding, also known as abnormal uterine bleeding.
To deny us access also denies women their basic right of self-determination and control over their own bodies.
Not to mention the right to maintain their choice of whether or not to get pregnant, a choice that is squarely, 100 percent, irrevocably removed through hysterectomy.
As a start, and on behalf of all women yesterday who attended the first Canadian uterine fibroids patient insights forum, I would like to make the following recommendations:
- That SOGC issue a news release announcing the publication of new guidelines for the treatment of abnormal uterine bleeding;
- That SOGC meet with representatives from this first fibroid patient group to discuss the results of this first patient forum, and that;
- That SOGC immediately make fibroids and heavy menstrual bleeding a communications and outreach priority and launch discussions with patient advocates about forming a working group between gynecologists and patient advocates in order to close the gaps in patient care and begin discussions on improving patient outreach.
No one knows what will happen as a result of yesterday’s historic meeting. We don’t even know if we’ll meet again. It’s expensive to get women from across Canada in the same room without any kind of funding. Perhaps that’s our next challenge. All we know is that the journey of a thousand miles begins with the first step and all of us in that room felt very convinced that we had all taken a giant step forward together, hand in hand.
Thank you to our sponsors, organizers, facilitators, video crew, caterers and most of all our amazing, wonderful Flow Fighters as I like to call them, who shared their brave battles with a disease no one wants to talk about.
It’s time to break the silence.
Drawing courtesy of Leah Silverman, visual artist who storyboarded the feelings, stories and conversations of the day through her art. Watch for more thought bubbles in upcoming blogs.