Thank you, Mr. Chair and members of the committee for the opportunity to provide evidence today about endometriosis for the women’s health study. We are grateful to the committee for prioritizing this issue.
I am Dr. Catherine Allaire. I'm a gynecologic surgeon. I'm also head of the UBC division of gynecologic specialties and medical director the B.C. women's centre for pelvic pain and endometriosis, an interdisciplinary centre we have in Vancouver for endometriosis care. I'm also co-lead of EndoAct Canada, an organization created to drive action on endometriosis in Canada, which was co-founded by the Endometriosis Network Canada and is a patient group, and the Canadian Society for the Advancement of Gynecologic Excellence, which is a physician group.
I am joined today by my colleague Kate Wahl, a Ph.D. candidate at the University of British Columbia and executive director of EndoAct. We look forward to sharing and clarifying our points of view and hope that the committee will also have the opportunity to hear directly from people living with endometriosis.
Endometriosis is a complex, chronic disease that affects at least one in 10 women of reproductive age and an unmeasured number of transgender, non-binary and two-spirit people. That’s approximately two million Canadians. The disease occurs when tissue that is similar to the lining of the uterus forms lesions, cysts and deep nodules on other parts of the body, including the ovaries, bowel and bladder. Symptoms of endometriosis often begin in adolescence and include severely painful periods, chronic pain and infertility. There is currently no cure for endometriosis, and the disease is managed through expert surgery, medications and complementary care.
Historically and to this day, endometriosis symptoms have been dismissed as just part of being a woman or a bad period. This is rooted in the widespread normalization of women’s pain and neglect of conditions that affect women and leads to delays in diagnosis and treatment as well as adverse outcomes. For example, teens with symptoms of endometriosis are 10 times more likely to miss school, impairing their ability to obtain their educational goals. Adults with unmanaged endometriosis are less able to participate in their work, community and family.
Beyond the physical impact of the disease, people with endometriosis also experience higher rates of mental health conditions. Endometriosis is not just a women's health issue; it is a societal issue. In fact, the cost of endometriosis to the Canadian economy has been quantified as $2.5 billion annually, primarily due to lost productivity.
Despite its high prevalence and the burden of endometriosis on Canadians, access to care remains poor. People wait an average of at least five and as long as 20 years to receive a diagnosis. This delay is attributed to poor public awareness of the disease and low knowledge among health care providers. Once people do receive a diagnosis, our recent informal survey of surgical experts across Canada found that patients are waiting six to 18 months to see an appropriate specialist and a further six to 24 months for surgical management. That’s a wait of up to three and a half years.
The reasons for this delay include an insufficient number of properly trained surgeons and inadequate remuneration for this type work, but, most importantly, lack of adequate OR access for those surgeons who choose to do this work. There is a consistent and concerning discrepancy in wait times for non-cancerous gynecologic conditions when compared to other non-cancerous surgical specialties. This is gender-based discrimination.