Every morning, Keana Casault wakes up and rates herself on a personal pain scale.
“If I say I have pain in five out of 10, that’s probably an average of 10 out of 10,” said the 25-year-old college student.
Where she sits on this pain scale affects every single decision for the rest of the day. Whether she can shower, do groceries, go to college classes, or even take her dog for a walk.
“I’m in pain all the time,” she said. “The pain is so bad it almost gets to a point where you don’t think properly. You have brain fog and you feel like you are going to pass out from the pain, and the pain is so bad that you can’t get out of bed. You can’t walk, you can’t even go to the bathroom.”
Casault, 25, is one of more than 1 million Canadian women who suffer from endometriosis — a gynecological disease that causes chronic, debilitating pain and in severe cases can lead to organ damage.
There is no known cure for this disease, which can also affect transgender and non-binary people who have – or have previously had – a uterus.
Despite its prevalence, experts say it can take 5 to 10 years for patients to receive a diagnosis and receive treatment — which can range from hormone therapy to surgical interventions.
The pandemic has lengthened waiting times for those surgeries – which are elective procedures – and is forcing women with endometriosis to put off their lives while waiting for surgery they consider necessary.
“There is already a significant backlog of endometriosis patients,” said Dr. Matthew Leonardi, a gynecological surgeon at McMaster University Medical Center in Ontario. He says several months went by during the pandemic when he could only perform gynecological cancer surgeries.
“There are months when I can have one or two inpatient surgery, which is a really unfortunate situation because the patient volume is again astronomical and we need to operate at a higher frequency.”
The pandemic delays surgeries
Endometriosis occurs when tissue similar to the lining of the uterus implants into the pelvic cavity outside the uterus to form lesions, cysts and other growths, according to the Canadian Endometriosis Network. This can cause pain, internal scarring, infertility, and other medical complications.
Association of Obstetricians and Gynecologists of Canada She recommends that patients explore hormonal therapies and pain medications before considering surgery. But some patient advocates argue that a specific surgical intervention known as a laparoscopic resection — in which the surgeon removes as much endometrial tissue as possible — is the gold standard of treatment.
Dr. Catherine Allaire, who heads the department of gynecological specialties at the University of British Columbia, says surgical delays have a significant impact on patients with this disease.
“The suffering is what worries me and the extra months of suffering patients go through,” she said.
“The problem is not only the delay from booking surgery to having surgery, but the delay in getting us, for example, that it was difficult to see family doctors, and it was difficult to get the imaging done.”
Cassault, who lives in Burnaby and studies tourism management at Capilano University, suffers from these delays firsthand. She began experiencing severe pain a decade ago when she was only 15 years old.
She underwent primary surgery in Dawson Creek, British Columbia, when she was 17, which was considered inconclusive. Since then, years of unsuccessful hormonal treatments have passed.
“I’ve tried pretty much everything and none have worked,” she said. “A lot of it has made a huge negative impact on my life, so I decided I was done waiting for it and I really, really need to have the surgery.”
Since she had surgery eight years ago and Casault was not considered a priority case for her surgical treatment in BC, she decided to go to a specialist outside the province and had an initial consultation with Leonardi in Ontario.
“I need to get this done. I want to feel better. I’m only 25.”
The pandemic has increased waiting times for all elective surgeries, but gynecologists say resources have always been limited.
“It’s reflected in the research funding,” Leonardi said. “It’s reflected in the reward for gynecological surgery.”
Both Waller say there are societal factors at play in delaying diagnosis.
“It’s a condition in which the main symptom is pain and pain, as we know, can often be ignored in women and people of diverse sexes,” Aller said.
Leonardi also says that true specialists in diagnosing and treating endometriosis through circumcision are few and far between in Canada. He says that while it is estimated that 10 percent of women have the disease, he estimates that only 1 percent of physicians specialize in endometriosis.
Calls for a National Action Plan
The advocacy group EndoAct Canada has pushed the federal government to do so Development of a national action plan on endometriosis Like the one in Australia and recently announced in France – a three-pillar strategy focused on increasing education, improving management and clinical care, and research.
In response to questions from CBC News about a national action plan, the office of Federal Health Minister Jean-Yves Duclos sent an email statement affirming its commitment to improving access to sexual and reproductive health. The statement did not mention endometriosis or any of the treatments related to the disease.
Leonardi believes that while there is no cure for endometriosis, early intervention is key to improving patient outcomes.
“If we treat this disease right in the beginning when it’s kind of in a state of period pain, I really think we can prevent people from having chronic pelvic pain where they are in pain all the time,” he said.
That would require more funding for gynecological research, Leonardi says.
For Casault, proper care begins with ending the normalization of menstrual pain.
“We’re told that periods are supposed to be painful,” she said. “It’s not.”
“You’re not supposed to miss work. You’re not supposed to miss things with your friends, or activities outside of your daily life. You’re not supposed to miss these things because of period pain or pain outside of your period.”