Quebec group demands endometriosis care overhaul as patients face years-long waits

A Quebec women's health advocacy group is calling for an overhaul of endometriosis care in the province, citing years-long wait times for surgery and a widespread lack of expertise. The Réseau québécois d'action pour la santé des femmes (RQASF) published an open letter Thursday addressed to Health Minister Marie-Karlynn Laflamme, co-signed by 66 signatories. The letter says patients face medical gaslighting and debilitating pain while waiting for care. It demands the province recognize pain as a criterion for prioritizing surgeries and re-evaluate any patient whose surgical priority timeframe has been exceeded.

"It's not just 'very painful periods,'" reads the letter. The RQASF says one in 10 women in Canada suffers from the chronic condition, which causes endometrial tissue to grow outside of the uterus, amounting to half a million people in Quebec alone. "Despite [the] risks, some women wait for years for a diagnosis and then months, if not more years, before receiving specialized surgical intervention in Quebec," the letter states. The group's demands include ensuring pain management during waiting periods through pelvic pain clinics and developing a provincial endometriosis plan to bring more expertise into the health-care system. It also calls for better training for family doctors and gynecologists to detect the condition and for the inclusion of patient groups in developing new health policies. As Quebec considers a broader health-care system overhaul, the RQASF asks that it specifically consider patients with endometriosis.

The experience of dental hygienist Zahra Norouziardaki, detailed in the letter, illustrates the challenges. After a hysterectomy a year and a half ago only aggravated her pain, she is still waiting for a new surgery date. She has been unable to work, sleeps very little and has seen her family life reorganized around her condition. In June, she was told she would be given a new surgery date within 90 days, but a medical note warned the wait could extend to a year due to health ministry constraints and medical backlogs. Over 140 days later, she is still waiting. "When a medical deadline is exceeded without explanation or any prospect of resolution: it amounts to abandonment," the RQASF's letter says. Faced with similar situations, some women have spent their savings to seek treatment outside of Canada. Novello Desserts reported in October that Canadian women are traveling to Mexico for endometriosis surgery amid long waits at home.

In a statement, Quebec's Health Ministry said women's health is a priority, notably by "improving the research, diagnosis and management of the diseases that affect them." The ministry said it will respond to the open letter. "Work is underway to identify the needs and the actions to be put in place, particularly in primary care," the statement said. "For too long, certain health issues specific to women have been less well understood and recognized. We want to do better."

With files from CBC News