Why Ontario Health is failing patients with endometriosis
If you live in Ontario, Canada and have endometriosis, you’ve probably spent more time in waiting rooms, on Reddit/FB threads or in agonizing pain, than you’d admit.
We know the stats: endo affects about 10% of women and gender-diverse people. But in Ontario, getting a diagnosis is only half the battle. The other half is fighting a healthcare system that (to put it bluntly) isn’t designed to handle complex diseases.
The barriers to care aren’t just “unfortunate,” they’re systemic. Let’s break down the “lane” we’re stuck in, in this blog post.
A whole-body disease in a "Gyn" box
Here is the weirdest part of the fight: We are working overtime to make the world understand that endometriosis is not just a “period problem.” It has been found on every single organ in the human body… from the lungs to the diaphragm to the brain. It is a systemic, multi-organ condition.
But here’s the catch… for funding and policy purposes, we have to keep staying in the gynecology lane.
In our current healthcare setup, if a disease doesn’t have a specific “home” or category, it gets lost. If we move endo out of the Gyn department, the already-tiny slice of funding that it gets, disappears entirely. We are essentially forced to stay in a “lane” that is too small for the disease, just so we don’t vanish from the budget altogether.
The math isn’t mathing.
Did you know that a MIGS in Ontario can spend 8 to 10 hours on a complex endometriosis excision surgery and earn less than someone assisting in a simple 2-hour general surgery?
You read that right. The math isn’t mathing.
It sounds fake but it’s the financial reality. Because OHIP billing codes are outdated and undervalue complex gynecological care (because that is what it falls under even if the surgeon is operating on the diaphragm or nerves), there is a massive financial disincentive for surgeons to specialize in endo. When we don’t pay specialists for their time, training and expertise, we have a scary chance of losing those endometriosis specialists helping people in Ontario’s public system to maintaining obstetric practices, privatization or leaving the province/country.
From a patient’s perspective, if/when specialists want to maintain obstetric practices, leave for the private sector, the waitlist for the rest of us doesn’t just grow; it stagnates because there’s no one left to do the heavy lifting.
Gynecology is the “neglected sibling” of obstetrics
In Ontario, OB (babies) and GYN (everything else) share the same pot of money. Guess which one usually gets the priority?
While pregnancy and birth are (rightfully) supported, non-malignant conditions like endometriosis are left in the weeds. Unlike gynecologic oncology, which has dedicated funding streams, endo doesn’t currently have a “home” in the provincial budget. We are navigating a system built for reproductive outcomes, not for lifelong chronic pain management for a disease that has no cure.
How do we fix this? Public investment, not privatization
We always hear that we need “more research.” And while research is crucial (SO crucial!), you can’t “research” your way out of a 3 year surgery backlog.
The solution isn’t moving surgical care into the private sector… it’s properly funding the public one. We don’t just need more qualatative papers telling us how much it affects our lives (bc we havethat data already); we need:
- Dedicated funding: Gynecology needs its own bank account, separate from obstetrics so they aren’t fighting for leftovers/crumbs.
- Funded OR time: Many hospitals have operating rooms sitting empty because there isn’t enough money to run them.
- More nurses and staff: A surgeon can’t operate alone. We need dedicated funding for the specialized nursing and support staff that make complex Gyn surgeries possible.
- OHIP Billing reform: Doctors should be paid fairly for the 8-hour marathons they perform to give us our lives back.
- Public centres of excellence: We need regional hubs where expertise is concentrated, so you don’t have to be a detective to find a good surgeon. We need regional hubs that are fully staffed and publicly funded, ensuring that care is based on need and not the size of your wallet.
- Mandatory primary care training: Your GP should be your first line of defense, not another person you have to convince that your pain is real. They should have knowledge on where to send referrals.
Endometriosis care in Ontario is a reflection of how we value (or don’t value) the health of those assigned female at birth. We must start demanding the system to acknowledge endo is a whole body battle while ensuring the “Gyn lane” is actually funded well enough to treat it.
Until then navigatng the Ontario healthcare system feels like a high risk, unchoreographed interpretive dance.
We should call it the “Endo cha cha.” It’s a dance where you take one long step toward a specialist, two steps back into an ER waiting room and then perform a jazz hand routine just to convince a doc that your pain isn’t “just part of being a woman.”
It’s a complicated, exhausting performance and we’re all tired of the music. We don’t need more “awareness” ribbons; we need a healthcare system that finally learns the steps to actual multi-disciplinary care.
In the meantime keep your heating pads charged and your voices loud. If we have to keep dancing this ridiculous dance, we might as well do it together until they finally give us the treatment we deserve.
Join us on March 23, 2026, for a Virtual town hall focused on where things are at politically and the future of endometriosis care in Ontario. We’ll discuss current policy initiatives and explore how our collective efforts can drive meaningful change.
References:
Systemic Inequities in Women’s Health: Provider Pay Gaps and the Role of Hospital Operations on Access to Care Leyland, Nicholas A. et al. Journal of Obstetrics and Gynaecology Canada , Volume 47, Issue 9, 103080
Women’s Health Coalition of Ontario Inequities in Gynecology Stakeholder Forum February 11, 2025 – Sukhbir Sony Singh MD, FRCSC, FACOG; Colleen McDermott MD, FRCSC Women’s Health Coalition of Ontario: Alita Fabiano (Chair) Women’s Health Coalition of Canada: Carmen Wyton
