Prince Edward Island will hold its first Run to End Endo in Charlottetown in June, aimed at raising money for the Endometriosis Network of Canada and increasing awareness of the condition.
Lauren Rogerson, a volunteer with the network, says endometriosis is a chronic disease that happens when tissues similar to the lining of the uterus implant outside the uterus — forming cysts, lesions and deep nodules or growths.
"Some people may experience very little pain or other common symptoms, and others have reoccurring symptoms that substantially affect their quality of life on a daily basis," she said.
The more painful symptoms can range from severe menstrual pain to chronic pelvic pain, she said. It may also cause infertility.
Rogerson said more education in schools would be a great way to raise awareness, especially as symptoms can begin early in a person's life.
'I ended up seeing many doctors across North America'
Rogerson began experiencing symptoms in junior high. What she experienced around her menstrual cycle wasn't similar to what her friends were going through at the same time, Rogerson said, and it got much worse as she entered high school.
She had severe pain, nausea, digestive issues, causing her to miss school and extracurricular activities.
I have never had a doctor, ever, in all this time … actually sit down and explain what endo was. — Green MLA Hannah Bell
"This was to the point where I became bedridden for most days of the month, and both my physical and mental health was suffering," she said.
"I ended up seeing many doctors across North America and … needing surgery during my first year of university and that's when I was diagnosed with Allen Masters syndrome — which, again, is the sister condition to endometriosis."
Just finding a name for her condition was a relief, and helped her find others who had similar symptoms.
Disease was raised in P.E.I. Legislature
The disease and a lack of awareness, even among health professionals, came up recently in the P.E.I. Legislature.
The Greens introduced a motion urging government to create an education campaign and diagnosis guidelines for the disease.
MLA Hannah Bell talked about her own experience with the disease, which started when she was 14.
"For most of my high school I would lose between five and 10 days of school every month," she said.
"Because the level of pain was so much that I couldn't stand up. I couldn't walk. I would faint from the loss of blood and the pain."
Bell said she had her first surgery when she was 16 and "nobody ever told me what this was." The pain came from a cyst — a side effect of endo, which she found out much later.
"I have never had a doctor, ever, in all this time … actually sit down and explain what endo was," she said. "I haven't actually ever been treated for this.
"We need to get past having to fight for recognition, and we need to get to the point where we're just talking about, 'How can I help you? I believe you and I hear you, how can I help you?' Women should not have to fight for relevance when it comes to being heard in their story, because their story is just as relevant as anyone else's."
MLAs passed the motion on May 5, and the Run to End Endo is happening exactly one month later.
The run will take place June 5 at 1 p.m. at the Victoria Park Cultural Pavilion. Anyone interested in taking part can visit the Run to End Endo website.