Women with endometriosis say they are enduring extreme pain due to pandemic surgery delays, lack of expertise

Every morning, Keana Casault wakes up and assesses herself on a personal pain scale.

"If I say I'm at a five out of 10 of pain, that's probably the average person's 10 out of 10," said the 25-year-old university student.

Where she sits on that pain scale impacts every single decision for the rest of the day. Whether she can take a shower, do groceries, go to university classes or even take her dog for a walk.

"I'm in pain all the time," she said. "The bad pain is almost getting to a point where you're not thinking properly. You have brain fog and you feel like you're going to pass out from the pain, the pain so bad you can't get out of bed. You can't walk. You can't even go to the bathroom."

Casault, 25, is one of over a million Canadian women living with endometriosis — a gynecological disease that causes debilitating chronic pain and can in severe cases lead to organ damage.

There is no known cure for the illness, which can also affect transgender and non-binary people who have — or once had — a uterus.

Despite its prevalence, experts say it can take anywhere from five to 10 years for patients to get a diagnosis and receive treatment — which can range from hormone treatment to surgical interventions.

The pandemic has extended wait-times for those surgeries — considered elective procedures — and is forcing women with endometriosis to put their lives on hold while they await a surgery that they deem essential.

"There is indeed a major backlog of patients with endometriosis," said Dr. Mathew Leonardi, a gynecological surgeon at McMaster University Medical Centre in Ontario. He says there were several months during the pandemic where he could only perform surgeries for gynecological cancers.

"There are months where I might operate on one or two endo patients, which is a really unfortunate state because the volume of patients is again astronomical and we need to be operating at a higher frequency."

Pandemic delays surgeries 

Endometriosis occurs when tissue similar to the lining of the uterus implants in the pelvic cavity outside the uterus to form lesions, cysts and other growths, according to Endometriosis Network Canada. This can cause pain, internal scarring, infertility and other medical complications.

The Society of Obstetricians and Gynaecologists of Canada recommends that hormone and pain medication treatments be explored for patients before considering surgery. But some patient advocates argue that a specific surgical intervention known as an excision laparoscopy — in which a surgeon removes as much of the endometriosis tissue as possible — is the gold standard of treatment. 

Dr. Catherine Allaire, who heads UBC's division of gynaecologic specialities, says surgical delays are having a major impact on patients living with the disease.

"The suffering is what I'm concerned about and the extra months of suffering that the patients are going through," she said.

"The problem is not only the delay from our booking surgery to them getting surgery, but the delay in getting to us, for example, seeing their family doctors was difficult, getting imaging was difficult." 

Casault, who lives in Burnaby and is studying tourism management at Capilano University, has been experiencing those delays first hand. She first started experiencing extreme pain a decade ago when she was only 15.

She underwent an initial surgery in Dawson Creek, B.C., when she was 17, which was deemed inconclusive. Since then, she's gone through years of unsuccessful hormone treatments.

"I've tried pretty much everything and none of it's worked," she said. "A lot of it's made a huge negative impact on my life, so I decided that I am done waiting for that and I really, really need to have the surgery."

Because she received a surgery eight years ago, Casault hasn't been considered a priority case for a surgical treatment in B.C. She decided to go to a specialist out-of-province and has had an initial consult with Leonardi in Ontario.

"I need to get this done. I want to feel better. I'm only 25."

The pandemic has accentuated wait times for all elective surgeries, but those working in the field of gynecology say resources have always been limited.

"It's reflected in research funding. It's reflected in remuneration for gynecological surgery," said Leonardi.

Both he and Allaire say there are societal factors at play that delay diagnosis.

"It's a condition that the main symptom is pain and pain, as we know, it can often get dismissed in women and gender diverse people," said Allaire.

Leonardi also says that true specialists in diagnosing and treating endometriosis through excision surgery are few and far between across Canada. He says while it's estimated that 10 per cent of women have the disease, he estimates only one per cent of doctors are specialized in endometriosis.

Calls for national action plan

Advocacy group EndoAct Canada has been pushing the federal government to develop a national action plan on endometriosis like the one that exists in Australia and was recently announced in France — a three-pillar strategy that focuses on increased education, improved clinical management and care, and research. 

In response to questions from CBC News about a national action plan, the office of federal Health Minister Jean-Yves Duclos emailed a statement underlining its commitment to improving access to sexual and reproductive health. The statement did not mention endometriosis or any of the relevant treatments for the disease.

Leonardi believes that while there is no cure for endometriosis, early intervention is key to improving patient outcomes.

"If we treat that disease properly at the beginning when kind of in its menstrual cyclical pain state, I really do believe that we can prevent people from developing chronic pelvic pain where they are in pain all the time," he said.

Leonardi says that requires more funding for gynecological research. 

For Casault, proper care starts with ending the normalization of menstrual pain.

"We've been told periods are supposed to be painful. They're not," she said.

"You're not supposed to be missing work. You're not supposed to be missing things with your friends, activities outside of your everyday life. You're not supposed to be missing those things because of period pain or pain outside of your period."