Emma Weiland wants teachers and school counsellors in the Kootenays to know about a common and dangerous disease they may have never heard of.
She wants them to know that endometriosis affects one in 10 women worldwide, and that it is excruciatingly painful, commonly misdiagnosed, impossible to cure, hard to treat, and often suffered by school-age women.
“We’re not asking teachers to become doctors,” Weiland says. “I don’t ask them to diagnose students. We’re just asking them to learn about it so they can then pass that on to families to be able to support their children to get the proper medical help.”
Weiland, who is 24, suffered the pain of the disease starting at age 12, and was debilitated by it throughout her school years in Nelson. It took her six years to get a diagnosis despite visits to many hospitals, doctors and emergency rooms, all while attending school.
After one failed surgery in Canada, she travelled to have a more specialized form known as excision surgery in the U.S. in 2019. She says there are only a handful of doctors in Canada who do excision surgery and the waiting list was such that it would have taken her two years to be operated on. She says the waiting lists for excision surgery are the same today.
Endometriosis is a condition in which tissue similar to the lining of the uterus grows in other parts of the body, most commonly in the pelvic area, causing pain, infertility and organ dysfunction. Its cause is unknown and research has been limited. Endometriosis was found on Weiland’s bowels, Fallopian tubes, appendix, bladder, uterus, and rectouterine pouch.
Without excision surgery, sufferers are traditionally given drugs, hormones, ablation therapy, or a hysterectomy. Those are considered palliative management.
Since her excision surgery Weiland’s endometriosis has completely subsided. She still has two other problems that cause some pain: adenomyosis, which is a disease of the uterus not related to endometriosis, and back pain from a childhood car accident.
Before her surgery she was too sick and weak to work.
“From being unable to work and being absolutely bedridden in the hospital two weeks out of every month on a morphine drip, it’s like night and day,” she says.
These days she is able to work at a part-time casual job, and to spend time advancing the goals of the Endo Educational Organization of Canada (EEOC), which she founded with her mother Deborah in 2019. The organization’s website can be found at https://endocanada.org/.
This video, entitled EndoWhat, is often used as an educational tool by EEOC.
Official Trailer - ENDO WHAT? from BELOW THE BELT on Vimeo.
One of the organization’s projects is to educate teachers and councillors in Kootenay schools so their students don’t have to suffer in school as Weiland did.
“I remember having my first surgery during high school, I had to miss a bunch of my exams at the end of the year. My teachers were doing everything they could just support me. But nobody had any idea of what I was dealing with.”
She says if endometriosis were a men’s disease it might be taken more seriously and not be so often dismissed as painful periods.
“But often it is more than that, and we need to listen to students,” she says.
Since their founding of EEOC, the Weilands have become part of many international endometriosis support and information networks and events.
Weiland says she talks with about five women per week who, despite time spent in doctor’s offices and hospitals, and are still in pain.
“They don’t know where to turn. I had a young girl last week who said to me that her doctor told her to get pregnant, which is the biggest misconception with endometriosis.”
Weiland has formed a relationship with a group in the U.S. that has produced materials on endometriosis for schools. She’s taken that material and Canadianized it, and now has a 12-page booklet, video and poster available for schools in this country. She’s also informally talked to local school teachers and counsellors, and has approached School District 8.
The schools project is being funded by the Nelson and District Credit Union.
“We don’t want to see another young student go through what I did,” she says, “which is suffering silently for so many years and having nobody to talk to about it.”
READ MORE:
• Endometriosis: the most common and dangerous disease you’ve never heard of