The disease affects 10% of women with uteruses, but it doesn’t get enough money or research
Maggie Archibald walks down her street to the hospital. She hasn’t slept in days because she’s been waiting for surgery that she hopes will change her life.
She fought for this care, going to and from doctors’ offices for years and even writing to politicians for help when it seemed like she wasn’t getting anywhere.
Archibald, who is 28 years old, is going to have surgery to fix her endometriosis. Medical staff will look for cell growth around her uterus and remove it. This will help ease the sharp pains in her abdomen that come on during her period and when she ovulates.
She said, “It’s kind of hard to work and kind of hard to pay attention.” “It’s hard to work from home and miss out on going out with friends and family.”
Late February is a sunny time. Archibald had to wait years for this surgery, but she still thinks she is lucky. She got a surgery date only after someone else had to cancel.
Her mom picked her up at the IWK Health Centre in Halifax, Nova Scotia. They hug, and she walks in, ready to start the next part of her life.
underdiagnosed and usually not treated
Endometriosis Network Canada says that up to 10% of women born with uteruses can get this disease. It happens when cells that look like the lining of the uterus grow abnormally outside of the uterus and form lumps, cysts, or other growths.
Even though scientists don’t fully understand what causes the disease or how to treat it, people who have it say the symptoms can be very painful.
Tracey Lindeman, an author, says that to find effective treatment in Canada, you have to find your way through a maze of health care professionals.
Watch: Advocates say that people can wait years for the right care.
She talked about a two-part problem: not all doctors take pelvic pain seriously, brushing it off as “bad periods”—a pain that comes with being a woman — and giving birth control and painkillers instead. For people who do get a referral for specialized care, the wait can be more than a year.
“There are different kinds of barriers all over Canada. But really long wait times are something that happens all over the country. “Lindeman, who wrote the book,Bleed: Busting Endometriosis Myths and Misogyny.
She said that some people have to go to their family doctors or walk-in clinics “dozens” of times before anyone listens to them.
Accessing care can take so long that some people go to other countries, like the US or Romania, to get help.
She said, “What ends up happening is that a lot of people with endometriosis feel like huge failures in life.” “You can’t do the simple things that everyone else can.”
It can be hard to find specialized care
Halifax is taking care of Archibald.Clinic for endometriosis and long-term pelvic pain, a clinic set up to mirror British Columbia has a similar system.
The clinic opened in September 2021, and it serves the three provinces of the Maritimes.
Elizabeth Randle, a gynecologist, said that it was opened to meet a need in the area. It was the first clinic of its kind in Atlantic Canada, even though the disease was very common.
But the wait to get into the clinic is 18 months, and in provinces where thousands of people don’t have a family doctor, it can be hard to even get a referral.
Still, that’s a step up. Before the clinic opened, people in the Maritimes had to wait more than two years to see a doctor about pelvic pain.
Randle said that people who need urgent care can sometimes go to the front of the line, but that people like Archibald often have to fight hard to get care.
“People are figuring out that what they’re going through isn’t normal, even if their family doctor doesn’t,” she said.
Both experts like Randle and people who have the disease are calling for more money and research to learn more about it.
“It happens as often as different kinds of cancer, for which we hold charity runs every year.” “Very few people are willing to admit how bad the effects can be,” said Lindeman.
Randle said that she would like to see more research and awareness, as well as more services, in the Maritimes.
Randle said, “They are definitely a group that hasn’t been studied enough.” “We don’t know much about the disease, and we need more money to really figure out why and how it happens.”
After fighting for care, it was nice to get some relief
Archibald’s surgery went well, and the endometriosis in her uterus was taken out.
She said hours after the surgery, “I’m really happy with how everything went.”
It’s still too soon to tell if her symptoms are gone after two weeks, but she says she feels good and less tired.
She hopes the pain is over, but she’s also thankful that the medical team took her seriously and made it possible for her to thrive and live without worrying about painful flare-ups.