Why these women are fighting for a national action plan on endometriosis

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There are calls for action coming from within the government, too. At a Federal Standing Committee on Health last November, the No. 1 recommendation from the women’s health report was to establish a national action plan on endometriosis.

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The road to diagnosis

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Because of a lack of funding and research, it takes about seven to ten years for individuals to get a diagnosis and access to endometriosis care here in Canada, says Singh, who performs minimally invasive diagnostic surgeries for the disease.

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He says that although endometriosis is about as common as a migraine, it’s not considered a priority in Canadian health care.

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“We are living in a system that is working in the way which we designed it, so we have nothing that incentivizes it to make this diagnosis, because once you make a diagnosis, the access to care to see a specialist and for surgery is years.”

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Things that are funded, like eye conditions, will be diagnosed because there’s money going into paying them to have surgery immediately, Singh explains.

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Singh and his colleagues wrote a guideline on endometriosis through the Society of Obstetrics and Gynaecology of Canada. Published last year, the focus was on urging for earlier diagnosis.

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These barriers to relief are more severe for Black people, says Josephine Etowa, a professor at the University of Ottawa’s school of nursing.

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In March, the Black Women’s Institute for Health surveyed 2,000 participants and found that anti-Black racism in Canadian health care is rampant, with half surveyed saying they delay care for fear of discrimination.

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This means that Black women might be more hesitant to seek a diagnosis for endometriosis, says Etowa, who is also the Canada Research Chair in advancing Black women’s health.

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“We know the issue is minimized and the symptoms are generally dismissed. So, when you add the layer that Black people face, of harm due to racial bias in the health-care system, we know they are less likely to have their pain believed and to receive adequate pain treatment. They’re also more likely to experience a delay in diagnosis,” Etowa explains.

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Josephine Etowa is the Tier 1 Canada Research Chair in Black women’s health and runs a lab researching how Black women experience layered barriers to accessing healthcare. Photo by JEAN LEVAC /POSTMEDIA

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Those who do seek a diagnosis might look elsewhere to find it.

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Etowa spoke of a former colleague who, two years ago, suspected she had endometriosis. Her symptoms were severe, but the delay to surgical diagnosis was so long in Canada that she went to Nigeria for surgery. She passed away before receiving treatment because of the pain.

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“We have people dying as a result of this,” Etowa says.

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No clear way forward

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Even after waiting a decade for surgery and diagnosis, there is often little relief beyond confirmation.

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“In 2016, after I had my first surgery, I experienced the worst endo-symptoms I’ve ever had,” said Summar Bourada, a Nepean resident who advocates to end the disease.

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Before diagnosis, Bourada struggled with worsening pain for a decade, which began in her stomach and spread as numbness in her legs.

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When a doctor first told her about endometriosis, she had no idea what it was — and said no one really did, even 10 years ago.

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After receiving an off-putting joke about removing her uterus that she didn’t find funny, she got her diagnosis.

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Then, she found out her condition was more severe than she thought, and she was put on another surgery wait-list.

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Summar Bourada, who was diagnosed with endometriosis a decade ago, has been living in pain since she was 14 years old. Now, she’s advocating for more research and funding to end the illness, as she’s the director of the upcoming “Run to End Endo” on May 30. Photo by Tony Caldwell /Postmedia

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While waiting, Bourada said she would often black out in pain, couldn’t walk properly, and took the maximum amount of prescription painkillers she could.

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Though she said a second surgery at The Ottawa Hospital helped, she still lives in constant pain and now needs a third operation.