Advocates in N.S. mark Endometriosis Awareness Month

Women living with endometriosis say nobody should suffer in silence with the chronic condition.

Julie Coutinho is just one of nearly two million Canadians living with endometriosis.

She was officially diagnosed with the chronic condition in 2020 but has dealt with its symptoms for most of her life.

“I thought I was dying because it was just so painful and out of nowhere, and I never expected it,” she says.

“It wasn’t as long for me once I identified the symptoms, did the research, went to my family doctor. But it was still a three plus year journey from that point. And I was obviously suffering unknowingly for years before that.”

Cairista MacIssac of Guysborough, N.S., has a similar story. She was diagnosed with endometriosis four years ago.

“When I was younger, I was very sick around my cycles. Painful periods and things like that. It wasn’t until later on, once I got my diagnosis and started to learn more about the disease, (I realized) things like stomach issues and bowel issues, which I also experienced at that young age, were also symptoms,” says MacIssac.

“I’d be running to the bathroom, I’d be throwing up, it was just a lot of unexplained symptoms, but they were impacting my daily life.”

One-in-10 women are affected by endometriosis, according to the Endometriosis Network of Canada.

“Starting at the age of their first period, so about 1.5 million Canadians, where the lining of the uterus, which normally comes out onto your sanitary napkin, actually, we feel, backs up into the fallopian tubes and out into your pelvis,” says Dr. Helen Sandland, a Nova Scotia-based OBGYN.

“The typical story is that young girls suffer with this from the time their periods start or very early on into their periods, and they actually suffer for about seven to 10 years before they actually seek or get medical help, I feel because of societal normalization of pain for women. They’re told, ‘oh it’s just a period. It’s just cramps. Suck it up as part of being a woman,” she says.

“Basically, they just normalize their own pelvic pain and continue to suffer until finally seven to 10 years later, it becomes unbearable.”

Dr. Sandland says that stigma is part of the reason lack of research on the condition remains sparse.

“It’s as common as diabetes and asthma, and yet there’s not near the amount of funding put into research on this,” says Sandland.

It’s a reality that has turned many patients, like Coutinho and MacIssac, into life-long advocates.

“I hope that the research and all of the work that we’re putting in will help so many more just feel seen and then get diagnosed faster than we did,” says Coutinho.

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