Canadian endometriosis patients face ‘substandard’ quality of care: experts

Click to play video: 'Canadian endometriosis patients face ‘substandard’ quality of care, experts say'
Canadian endometriosis patients face ‘substandard’ quality of care, experts say
WATCH: Endometriosis is a painful gynaecological disorder, affecting more than half a million women in Canada. But experts now believe the number is much larger. And thousands of patients are being misdiagnosed and even worse, ignored. As Jamie Mauracher reports, doctors at one Toronto hospital or sounding the alarm on what they call a substandard quality of care – Nov 14, 2021

Denise Nadalini said she suffered excruciating period pains for more than two decades.

“I had extremely painful periods to the point where I was on the couch in the fetal position, sweating and still, after going to the doctor numerous times, I was told to deal with it with over-the-counter medications, which really didn’t do much,” the 50-year-old said.

She had pain in her bladder and other symptoms that got worse over time, she said. “I had difficulty conceiving, difficult pregnancies. I had miscarriages.”

She even had to quit her teaching job because of the pain, she said.

Read more: Endometriosis affects 1 in 10 women – here’s how to recognize the symptoms

But even though she sought help, doctor after doctor brushed off her concerns.

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“I felt so dismissed most of the time,” she said. “They were male doctors and they just didn’t listen to me, and it’s not normal to have this kind of pain and for them to be OK with me not being able to do my job as a result of all this pain, it was awful.”

After about 25 years of suffering, Nadalini was finally diagnosed with endometriosis: a condition where tissue similar to that found in the lining of the uterus grows outside of it, elsewhere in the abdomen. This can cause pelvic pain and cramping, especially during menstruation, and pain during intercourse, as well as heavy menstrual bleeding.

Click to play video: 'Here’s what you need to know about endometriosis'
Here’s what you need to know about endometriosis

It’s also connected to other conditions, like infertility, and is even associated with stroke, according to a recent prospective study.

Nadalini’s experience is all too common in Canada, experts say. Although a 2020 paper published in the Journal of Obstetrics and Gynaecology Canada estimates that around one in 10 Canadian women suffers from endometriosis, it takes an average of five years to get a diagnosis.

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“A lot of times, women are very much dismissed by their primary care providers, by the initial people that they go to see, where painful periods are chalked up to being normal,” said Dr. Ally Murji, an obstetrician/gynaecologist at Toronto’s Sinai Health System.

“And just because their moms had it and their grandmothers had it, people are told that this is a normal part of life when it isn’t.

Even if a doctor takes a patient’s symptoms seriously, diagnosing and treating the condition can require a number of specialists, like surgeons, pain specialists, fertility specialists and pelvic floor physiotherapists, Murji said, which is complicated to arrange in Canadian health-care systems.

Click to play video: 'Health Matters: Endometriosis diagnosis a struggle for many'
Health Matters: Endometriosis diagnosis a struggle for many

“The disease is neglected by the health-care system,” said Dr. Nucelio Lemos, a Toronto gynaecologist and pelvic surgeon who eventually treated Nadalini. He estimates that his waitlist currently has around 500 patients seeking a first consult.

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Lemos, who moved to Canada from Brazil in 2017, says Canada is far behind other countries when it comes to diagnosing and treating this common condition.

“When I got here in Canada, I was shocked to hear the term diagnostic laparoscopy, which I hadn’t heard for at least 15 years in Brazil,” he said.

Read more: Patients welcome Atlantic Canada’s first multidisciplinary endometriosis clinic

“We need more doctors for diagnosis. We need more awareness campaigns,” Lemos said, adding he would also like more medications approved to treat endometriosis in Canada, as the options are not as broad as in the U.S. or Brazil.

The solution comes down to funding, experts say, and Health Canada says that’s up to the provinces.

“Really with the resources that we have, our hands are tied and we’re not really able to provide the care that women deserve,” Murji said.

“Unfortunately in women’s health, and we see this in a variety of different ways, sometimes the funding is lacking, the understanding is lacking, the advocacy is lacking. And really the result is substandard care.”

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