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Recently as I was preparing to participate at a conference on endometriosis in the U.S., I mentioned I was Canadian to one of the organizers. “I’m so sorry,” she replied.

Canada is known by advocates around the globe for having some of the worst endometriosis care in the developed world, a situation made worse by gatekeeping at the family medicine and generalist OBGYN levels, a stubborn lack of expertise on how to treat this complex illness, and some of the longest specialist wait times on record.

In fact, the waits for diagnosis and surgery can be so long that some Canadians opt to travel to the U.S., Romania and other countries to get surgery, which they typically pay for out of pocket.

Endometriosis is not only an extremely painful condition, but it is also more common than many people realize: between one and two million Canadians and about five per cent of the global population are affected, the overwhelming majority of them women and girls. (Because of poor data collection practices, there are also untold numbers of trans and non-binary people, as well as cis men, with this disease.)

My own struggle with the medical system began at 11, when I got my first period during the summer before starting Grade 7. The pain was simply breathtaking. Yet, everyone around me — including multiple doctors — said it was normal.

“It’s just a bad period,” they repeated as they handed me prescriptions for the birth control pill and naproxen.

As I discovered two-and-a-half decades later — and as I detail in my new book, BLEED: Destroying Myths and Misogyny in Endometriosis Care — what I had been experiencing all that time was indeed not normal. At age 35, I was diagnosed with stage-four endometriosis, a condition in which tissue similar to the uterine lining grows outside the uterus.

Endometriosis lesions commonly grow on the ovaries, bowel, and bladder. Picture pouring a bottle of glue into a person’s abdominal cavity and watching as their organs fuse together.

In rarer cases, lesions spread to the lungs, the brain and even the skin. Some people with lung or diaphragmatic endometriosis routinely black out from catamenial pneumothoraxes — in other words, their lungs collapse in sync with their menstrual cycle.

People I interviewed for BLEED described the pain using terms like “burning,” “twisting” and “worse than giving birth.” Marit Stiles, the new leader of Ontario’s NDP, told me in 2021 that “stabbing is a good way to think about it.”

There is a daunting volume of misinformation on endometriosis and its various “cures” to be found online. The reality is that most patients only find some degree of relief once their lesions are surgically removed. Finding surgeons with experience doing this procedure is challenging, chiefly because there are so few of them. Add to that the fact that although it has likely been around for thousands of years, the scientific community still doesn’t agree on what causes endometriosis.

There are a lot of reasons why endometriosis care is so abysmal in Canada, and none of them are simple.

There are systemic reasons, like doctors’ routine disbelief of women and gender minorities, especially if those people also happen to be Black, Indigenous, poor, gay, fat, mentally ill, young, old and/or otherwise different. Endometriosis patients report visiting doctors dozens of times before their pain is taken seriously. This is exacerbated by the fact many medical institutions were designed long ago by men, for men. The realm of gynecology remains no exception.

There are economic reasons. In the U.S., pharmaceutical companies dump $10 billion a year into doctors’ pockets. You can see it in action in that U.S. government’s Open Payments database. Canadian doctors receive incentives from the pharmaceutical industry, too, but are not required to disclose this information. Meanwhile, as a ProPublica investigation noted, just one meeting over lunch with a pharmaceutical rep is enough to influence the prescribing practices of some doctors. Might that explain why hormonal contraceptives remain the number-one treatment for endometriosis, despite ample evidence – including from the influential American College of Obstetricians and Gynecologists – that they do not stop the disease’s progression?

Beyond and within each of these issues lie more nuanced and complicated reasons why endometriosis care is failing patients, both globally and locally.

What are Canadian policymakers going to do about it?

Spain just announced menstrual leave for people with painful periods. That could serve as a helpful place to start. Since endometriosis pain is often most acute during menstruation, giving people with painful periods access to a bank of paid days off would help address absenteeism and enable patients’ greater economic participation.

Provinces should improve curricula so that all students, including boys, are better taught about the female reproductive system. If more people possessed a more comprehensive understanding of how cis women’s bodies work, it stands to reason leaders in industry and government might make decisions leading to better treatment options.

However, I would argue the greatest onus lies on the healthcare system itself, and the programs where medical professionals are trained, to bring much-needed improvements.

First, GPs and generalist gynecologists need to better collaborate with their patients. Right now, more than 60 per cent of GPs report feeling “uncomfortable” diagnosing and managing endometriosis. In the absence of definitive knowledge, doctors should listen to their patients, admit to what they don’t know, and be curious about finding answers. They should also embrace their roles as referral givers; in Canada, there are only a few endometriosis specialists, and it takes years for patients to reach them. GPs and gynecologists can help accelerate access.

To address bottlenecks, patients need healthcare portability. With so few endometriosis specialists in Canada (and really, around the world), many patients get locked into years-long battles with their local healthcare authority as they beg to have surgery covered out-of-province. Giving patients timely access to a qualified specialist in another province — or even another country — could dramatically change the lives of more than a million people in Canada alone.

Alleviating the bottleneck also demands new ways of incentivizing medical residents to pursue advanced training in minimally invasive gynecologic surgery (MIGS), which is a critical requirement for effective treatment of endometriosis.

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Federal and provincial governments should fund multidisciplinary endometriosis centres where patients can access specialists alongside complementary services such as pelvic floor physiotherapy, which can significantly reduce pain before and after surgery. For example, as one endometriosis surgeon in Italy told me, patients with suspected or diagnosed endometriosis have direct access to these kinds of centres, with no referral required.

Endometriosis is a thief. There are the personal costs; it robbed me of career opportunities, peace of mind and tens of thousands of dollars spent on ineffective treatments. It costs the Canadian economy of more than $2 billion a year in lost productivity and wages. It steals ambition, fertility, and life enjoyment from five per cent of the global population, and picks the pockets of spouses, friends and caregivers. As a disease that overwhelmingly affects women and other people of marginalized genders, endometriosis is a threat to equality and social progress.

Canadian healthcare regimes, medical schools, and practitioners already have the tools needed to disassemble many of the obstacles encountered by endometriosis sufferers. What’s missing is the courage and will to take action right now and to develop workable, realistic solutions to helping millions of people in pain regain their lives.

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