Misogyny in Canadian health system delays endometriosis diagnoses, Montreal author says

A Montreal author is aiming to change the narrative around endometriosis in her new book “Bleed: Destroying Myths and Misogyny in Endometriosis Care.”

One million people in Canada live with a complex and debilitating chronic disease called endometriosis – a systemic, inflammatory condition characterized by the growth of endometrial-like tissue outside the uterus.

Some have described the pain of endometriosis as “someone crushing your reproductive organs” or “worse than childbirth.”

Treatment is still scarce and a diagnosis can take years. It’s something Montreal journalist and author Tracey Lindeman wants to change.

“I thought what was missing from the dialogue is how we’re set up to fail in the first place and how it’s very difficult to actually help yourself when you have endometriosis,” said Lindeman.

“I was like, what do you mean? People aren’t in constant agony when they have their periods? And yeah, that realization is really eye opening.

“The average wait time for people to get diagnosed with endometriosis is about 10 years in Canada. So that means from the time they start seeing a doctor about their pain till the time that they get a diagnosis. So it’s not necessarily when their period first starts, it’s really from when they start asking for help. For me, it took 24 years to get diagnosed.”

Lindeman had a total hysterectomy and excision surgery two-and-a-half years ago after suffering with endo pain since she was 11. She still does ‘til this day despite no longer having a uterus.

She says she experiences medical gaslighting, and that the Quebec medical system has failed her and thousands of others.

“It was awful from the very beginning,” she recalled. “It was really long, really heavy, really painful. But everybody around me just said, that’s normal. That’s part of being a woman. Everyone gets terrible periods.

“I was relieved to know that you know, there was something wrong with me, that I hadn’t just made it up, as a lot of doctors kind of suggested, that I had just kind of exaggerated my pain.

“But I was so mad at how long it took for me to get this diagnosis and like why it took so long for someone to believe me, listen to me and then look for answers with me.”

Lindeman’s book is a memoir about her experience with the disease and an investigative piece into the health-care system in regard to endometriosis care.

“The reason that it takes so long for people with endometriosis, including women, trans people, non-binary people to get a diagnosis is, I think, fundamentally because of misogyny in the medical system,” said Lindeman. “We kind of view females, quote unquote, as prone to exaggeration, maybe even lying about our symptoms, to be able to get attention from health-care providers.

“It’s a really common attitude when you go see a doctor is that they kind of start off by not believing how much pain you could possibly be in.”

In 2018, Australia launched a national action plan for endometriosis. And Spain now offers menstrual leave for those with painful periods.

Advocates want the same in Canada.

“The fact is that because we’ve been disbelieved for so long, a lot of people with endometriosis end up becoming extremely high functioning,” said Lindeman. “Even when you feel awful, you still do all the things that you think you should be doing because you’ve been told to suck it up.”

Lindeman says all students, including boys, need to learn more about the reproductive systems of people who are assigned female at birth and to understand how that system affects them.

Future medical professionals also need to be better equipped and trained on the disease.

“Bleed: Destroying Myths and Misogyny in Endometriosis Care” will be available for purchase March 21.

March is Endometriosis Awareness Month.