Last year, I wrote about my experience with fibroids and adenomyosis for TVO Today. After near-weekly emergency room visits, I was told that I needed surgery to address my condition — but there was a two-year waitlist. Then came more ER visits and monthly iron infusions. My blood pressure reached hypertension levels. With the help of my family doctor, I cold-called gynecologists across the province and eventually got a spot in Belleville. But that was far from where I lived; luckily a surgeon in Ajax was able to offer me a spot after more than a year wait. During that time, my hair fell out and I repeatedly wound up in emergency. My surgery was meant to be non-invasive and laproscopic. But once I was on the operating table, my surgeon realized that my surgery would be more complicated as some of my internal organs had fused together.
My story is not unique.
After more than 20 surgeries and a hysterectomy to treat her endometriosis, Chantal Harding flew from her home in Nova Scotia to the U.S. for a surgery that is not easily available in Canada. “My quality of life, as a mid-40s woman with young children, was not great,” she told Global News. “When I went down, my stomach was attached to my bowel, was attached to my bladder. Everything was intertwined and stuck together.”
She says it cost her roughly USD$50,000 out of pocket.
Jessica Todd, a nurse from Kelowna, British Columbia was also suffering with endometriosis. She told Global News that she left her job because she only had ten good days a month — the rest were marked by debilitating cramps, nausea, headaches, and fatigue. She flew to Mexico for surgery after waiting more than two years for care.
“I feel like I was forced into that decision by the state of our health-care system,” she told Global. “I feel immensely grateful that I was able to act on that and go elsewhere for surgery because it’s so overwhelming to be laying in your bed day after day after day not knowing when it’s going to change.”
My friend Amber Mac wrote in the Globe and Mail in 2023 about her attempts to get care for her fibroids.
After writing about my experience (and speaking with CBC News) friends and strangers reached out to share stories and ask for advice. One woman said her mother was on a waitlist for fibroid care for more than 10 years.
One common thread: most did not have a family doctor to refer them to a gynecologist. Even those with a referral found themselves waiting months or years — time they spent in often debilitating pain.
According to the Endometriosis Network Canada, it takes five years to be diagnosed with endometriosis on average. For some women, it can take decades.
So, in early June when the Canadian Institute for Health Information released its annual study on priority surgery wait times in Canada, I was keen to see the results for gynecology.
But gynecology was not in the report. I thought I had misread it, so I sent an email to CIHI for clarification. “You are correct — wait times for gynecological surgery are not included in this report,” a spokesperson confirmed over email.
Since 2004, provincial governments have worked with CIHI to improve public wait time reporting for “priority procedures” such as cancer treatment, cardiac care, diagnostic imaging, joint replacement, and sight restoration. The thinking: without good wait-time data, we can’t solve the problem of long waits.
Over the last few years (in part to tackle surgery wait times exacerbated by the pandemic), the Ontario government has opened clinics to tackle knee and hip replacements and cataract surgery backlogs.
But given that women are forced to travel out of country for surgeries, gynecological wait times should be given higher priority. They should be studied, and that study should lead to action.
Sadly, this is not just a local problem. Gynecology waitlists in the U.K. have tripled in the last 10 years; a patient in Scotland can spend “100 weeks on an ‘urgent’ NHS waiting list for surgery”; and women in Australia are waiting to be diagnosed and are paying out-of-pocket to get the care they need. Not to mention the assault on women’s health in the United States.
The news is not all bad. Four hospitals in Toronto are collaborating to address the gynecology backlogs, funded by the ministry of health’s Surgical and Diagnostic Imaging Efficiency & Innovation Initiative. The project, co-led by Women’s College Hospital and Humber River Hospital, is clearing waitlists and working to collect better data.
Humber River has also become the only hospital in Ontario to offer fibroid treatment that is less invasive than a hysterectomy. While the surgery has been available in the U.S. for years, it only became available in Ontario in 2022.
The Society of Obstetricians and Gynaecologists of Canada released new national guidelines to help patients who have experienced early pregnancy loss.
Each time I was in the emergency room, I thought about how much it cost the health-care system. Every visit took resources; had I received the care that I needed when I needed it, everybody would have been better off.
This could change, if only we considered gynecological care a priority.
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