A young woman arrives at a walk-in clinic in Northern Ontario with persistent pelvic pain, heavy bloating and fatigue so severe she’s missed weeks of work. She’s told it’s “just stress,” prescribed birth control and dismissed. Six years later – after repeated emergency department visits, escalating symptoms and disruption to nearly every aspect of her life – she’s finally diagnosed with endometriosis.
Unfortunately, this isn’t an outlier. This is routine.
Endometriosis affects one in 10 women and gender-diverse people in Canada. It’s a chronic inflammatory condition in which tissue similar to the endometrium grows outside the uterus, on the ovaries, bowel, bladder and beyond. It causes severe pain, infertility, fatigue and multisystem dysfunction. It’s not a rare disease. It’s not new. And it’s not hard to diagnose when providers know what to look for.
So why do patients wait an average of seven to 10 years for diagnosis?
Why are they often forced to advocate for themselves across dozens of clinical encounters, only to encounter disbelief, dismissal or delay?
And most urgently: Why has Canada not developed a national strategy to respond?
As a PhD candidate specializing in endometriosis phenotyping and systems-level research, and in my roles with several endometriosis organizations, I’ve seen this pattern of neglect play out across every domain: research, care access, data collection and policy design. What we’re dealing with is not just a clinical challenge, it’s a public health failure rooted in long-standing gender bias and systemic inertia.
Endometriosis carries a significant economic burden. A 2021 study published in the Journal of Obstetrics and Gynaecology Canada estimated the disease costs $1.8 billion annually in direct health-care expenses and lost productivity. That figure doesn’t even capture the indirect effects: patients dropping out of school, leaving the workforce, abandoning fertility plans or living with chronic pain and mental health deterioration. Nor does it reflect the unequal burden borne by those in rural, Indigenous and racialized communities, where access to specialized care is even more limited.
Despite these impacts, Canada remains one of the only G7 countries without a coordinated national strategy. We have no standardized clinical pathways. No federal surveillance tools. No sustained, ring-fenced funding line for endometriosis research or care innovation. While the Canadian Institutes of Health Research (CIHR) has funded critical projects in recent years, this has occurred in the absence of a guiding federal vision or implementation roadmap.
Compare this to Australia, which introduced its National Endometriosis Action Plan in 2018, backed by federal funding, patient consultation and clinical training initiatives. France and the United Kingdom have since followed with their own strategies. These countries aren’t further ahead scientifically, but they’ve made an intentional choice to recognize endometriosis as a structural issue requiring policy coordination, not piecemeal research grants.
In Canada, that choice hasn’t yet been made.
The solutions are not speculative. We already have evidence-informed models from across provinces and international health systems. What’s needed now is federal leadership to connect the dots: a national endometriosis strategy, co-developed with researchers, clinicians and, most importantly, patients. Such a strategy must include:
- Dedicated federal funding for clinical and translational research, not just through competitive open calls, but through targeted investment in care model evaluation and innovation.
- National surveillance mandates, including prevalence tracking, diagnostic timelines and equity stratification.
- Provider training frameworks across primary, emergency and specialty care, with emphasis on menstrual and pelvic pain recognition.
- Care access mapping, to identify and eliminate diagnostic deserts and treatment disparities.
- Integration of menstrual and gynecologic health into gender-based analysis frameworks within Health Canada, Women and Gender Equality Canada and the Public Health Agency of Canada.
Without federal coordination, provinces are left to act in isolation – or not at all. And patients fall through the cracks.
Endometriosis does not appear in the federal budget. It is not a line item in public health mandates. It is absent from most provincial data collection. And until very recently, it was rarely mentioned in medical school curricula.
The message this sends, intentional or not, is that some pain just doesn’t matter.
But those of us in this field know better. Patients have been organizing, educating and pushing forward for decades. Clinicians are eager for training. Researchers have diagnostic and therapeutic innovations ready for scale.
What we lack isn’t evidence. It’s a commitment.
If we want to build a more equitable and responsive health-care system, one that doesn’t leave millions behind, we must start by acknowledging endometriosis as the national health issue that it is. Anything less is a disservice to those who’ve already waited long enough.
I would have assumed the increasing proportion of doctors, especially gynecologists, who are women would have made a difference over the last few decades, at least to the level of awareness and the attitudes of treating physicians, but it seems this hasn’t happened. And the situation is not unique to endometriosis. A gynecologist, in this case a woman, told me a few years ago that there are very few clinical services available to women who suffer, sometimes terribly, from a variety of pelvis-related problems such as pelvic dyssynergia. She also mentioned there is very little research being carried out in this area.
Also, the author says “patients have been organizing,” but perhaps it matters more how they’re organizing than that they are organizing. One suggestion: be sure to include middle-aged and older women who can speak to and illustrate how endometriosis often greatly diminishes the quality of women’s lives–and families’ lives too–over several decades. (Hilary Mantel has very vividly recounted her horrific experience of endometriosis in her memoir, Giving Up the Ghost.)
Frank, thank you for this thoughtful comment. You’re absolutely right, the growing number of women in medicine hasn’t automatically translated into better outcomes for patients with endometriosis or related pelvic conditions. The issue isn’t only about who provides the care, but how the system trains, resources, and incentivizes clinicians. Without adequate education, research investment, and dedicated clinical services, patients are still left behind regardless.
I also appreciate your point about representation in advocacy. The voices of middle-aged and older women, who carry decades of (and continued) lived experience, are essential to showing just how far-reaching the impacts of endometriosis can be, not just for individuals but for families and communities. Bringing those stories forward alongside younger voices can help paint the full picture of what’s at stake and why systemic change is so urgent!
Great article. I am 57 years old and have lived with endometriosis all my life. Only after an emergency C section at 40 was I formally diagnosed with severe endometriosis. They removed a large grapefruit sized bungle of endo from my belly!
I am now post menopause and still have severe pain but infrequently at this stage. I am sure the endo has grown back to a degree.
Thanks for the ability to comment.
Tina, thank you for sharing your experience. It’s heartbreaking how often a diagnosis only comes during emergencies or major surgeries, rather than through early recognition and proactive care. To still be managing pain after menopause shows just how persistent and complex endometriosis can be; it doesn’t simply end with age or with surgery!
Your story highlights exactly why we need better education, earlier diagnosis, and comprehensive, lifelong care strategies for endometriosis. I’m grateful you took the time to comment — voices like yours make clear how urgently change is needed :)
I didn’t get diagnosed until my hysterectomy at age 44. 30 YEARS!! Since there is little education on how to read tests with endometriosis my ultrasounds, mri’s, etc. always showed “there is nothing there” when indeed stage 4 was there!!! Since my surgery 5 years ago I have been in pelvic pain (almost) every single day
making going back to work impossible. My whole life has changed since that surgery. My current gyno answers are, “well I know you have anxiety,” “once you have endo you’ll always have it, having more surgeries might be even worse for you.” Her nurse told me “there aren’t stages in Endometriosis.” Her PA told me “since you don’t have your uterus it shouldn’t grow back and that my doctor is very good at removing it.” I made an appointment that day to see an endo specialist.
These doctors, nurses and radiologists need so much more education on Endometriosis.
Amber, thank you for sharing your story. Thirty years is far too long to wait for answers, and the fact that your symptoms were dismissed and misunderstood even after surgery speaks to the exact systemic issues we need to address. You shouldn’t have had to fight this hard to be believed.
You’re absolutely right, education is critical. Too many providers still lack the training to recognize endometriosis, interpret imaging, or manage care beyond surgery. Patients deserve specialists who take their pain seriously and health systems that don’t leave them to navigate this alone.
Your experience is powerful, and it underscores why we need a coordinated national approach, so that no one else spends decades in pain before getting the care they need!!!