Misunderstood and underdiagnosed, Canadian patients wait years for endometriosis care

Maggie Archibald trudgesdown her street to the hospital, bleary-eyed from having not slept in anticipation ofa surgery she hopeswill change her life.

It's care she's fought for spending years in and out of doctors' offices, even writing to elected officials asking for help when it seemed like she was getting nowhere.

Archibald, 28, is receiving surgery to treat her endometriosis. Medical staff will identify and remove cell growth around her uterus, with the goal of easing dagger-like abdominal pains that flare up during menstruation and ovulation.

"It's kind of hard to work, kind of hard to focus," she said. "It's having to accommodate working from home and not going out with friends and family."

It's a sunny day in late February. Archibald waited years for thissurgery, but still considers herself lucky. She scored an operating date only after someone else cancelled theirs.

Her mom met her at the front doors of the IWK Health Centre in Halifax. They embraceandshe walks in, ready for her next chapter.

Underdiagnosed, often untreated

The Endometriosis Network Canada says that the disease affects up to 10 per cent of people born with uteruses. It occurs when cells similar to the lining of the uterus implantabnormally outside the uterus andform lesions, cysts and other growths.

While there are scientific gaps in the understanding of the disease what causes it, how to cure it patients say the symptoms can be debilitating. Even after treatment, it can grow back.

But finding effective treatment in Canada involves navigating a labyrinth of health-care professionals, according to author Tracey Lindeman.

WATCH | People can wait years for proper treatment, advocates say:

Endometriosis goes underdiagnosed in Canada, advocates say

2 years ago

Duration 2:02

Endometriosis is a debilitating illness that affects roughly 10 per cent of women, but getting it diagnosed and treated in Canada can take years.

She described a two-pronged problem: not all medical professionals take pelvic pain seriously, dismissing it as "bad periods" a baked-in, womanly pain and prescribing birth control and painkillers. For those that doreceive a referral for specialized care, wait times can exceed years.

"Barriers exist all across Canada in different ways. But something that's really common across the country is impossibly long wait times," said Lindeman, author of Bleed: Destroying Myths and Misogyny in Endometriosis Care.

She said some people go to family doctors or walk-in clinics"dozens" of times before anyone takes their concerns seriously.

Accessing care can take so long that some patients travel to other countries, including the United States and Romania for treatment.

"What ends up happening is a lot of people with endometriosis end up feeling like huge failures in life," she said. "You can't do the basic things that everyone else seems able to do."

Finding specialized care can be a challenge

Archibald's care is provided by Halifax's endometriosis and chronic pelvic pain clinic, a clinic set up to mirror a similar model established in British Columbia.

The clinic opened in September 2021 and serves all three Maritime provinces.

Gynecologist Elizabeth Randle said it was opened to fulfilan unmet need in the region. Despite the prevalence of the disease, it was the first clinic of its kind in Atlantic Canada.

Butthe wait to get into the clinic is 18 months, and even getting a referral can be challenging in provinces where thousands of people have no family doctor.

That's still an improvement. Before the clinic opened, the wait time for a pelvic pain referral in the Maritimes wasmore than two years.

Randle said patients requiring urgent care can sometimes jump the queue, but said it's not uncommon for people like Archibald to have to lobby aggressively to get care.

"People are realizing, even if their family doctor doesn't, that what they're experiencing isn't normal," she said.

Experts like Randleand patients alike are calling for greater funding and research to learn more about the disease.

"It's as common as various forms of cancer, which we have [charitable] runs for, every year. There's just very little willingness to recognize how severe the impacts can be," said Lindeman.

Randle said she'd like to see services expanded in the Maritimes in addition to increased research and awareness.

"It definitely is an underresearched population," said Randle. "We don't know a lot about the disease and we need more funding to be able to really understand why it happens and how it happens."

After fighting for care, some relief

Archibald's surgery was a success: endometriosis was removed from her uterus.

"I'm really pleased with how everything went," she said hours after the surgery.

Two weeks later, it's still too early to know if her symptoms are gone, but she reports feeling good, and less tired.

She hopes the pain will now be part of the past, but says she's thankful for a medical team who took her seriously, paving the way for a future where she can thrive andlivewithout the fear of painful flare-ups.