Advocates link pain to lost work and urge broader disability coverage for endometriosis
Nearly 2 million Canadians live with a painful disease that can push them out of the workforce, yet it often goes unrecognized in disability systems and benefits.
According to CBC News, a Cambridge advocate wants Ottawa to classify endometriosis and adenomyosis as disabilities when they prevent people from working and to raise federal funding for research and earlier diagnoses.
Her petition, launched by Cambridge resident Laura Cairns and sponsored by Green Party MP Elizabeth May, seeks formal recognition of how these conditions affect people’s capacity to stay employed.
Cairns has lived with endometriosis for almost two decades.
She told CBC News that “my life has been destroyed by this disease” and that she feels caught in “an endless cycle” where she cannot afford treatment or time away from work.
She said the pain keeps her from working regularly and has pushed her into low income and job insecurity.
According to CBC News, Green Party deputy leader Mike Morrice said endometriosis is meant to be covered under the Canada Disability Benefit, but access depends on qualifying for the disability tax credit.
He said a broader definition of disability is needed so women can receive financial support and noted “a pattern where folks with disabilities, particularly hidden disabilities are not given the supports that they deserve and often the case that women’s health isn’t prioritized.”
In order for the petition to be tabled in the House of Commons, 500 signatures are required, and once May tables it, the government has 45 days to respond.
Cairns told CBC News she wants at least one million signatures because “there are so many people who are absolutely desperate, and I am one of them.”
Endometriosis is a chronic disease in which tissue similar to the lining of the uterus grows outside the uterus, most often in the pelvic area and less commonly on the bladder, lungs and brain.
Symptoms include pelvic pain, pain during sex, bowel and bladder symptoms, fertility issues and fatigue. CBC News reports that it affects about one in 10 women worldwide.
CityNews reports that March is Endometriosis Awareness Month and that the disease affects one in ten women and unmeasured numbers of gender-diverse people, meaning almost 2 million Canadians have endometriosis.
The impact on work can be significant.
Advanced gynaecologic surgeon and ultrasound specialist Mathew Leonardi of McMaster University and Hamilton Health Sciences told CBC News that about one in six women lose work because of endometriosis and adenomyosis.
He said many of his patients are functionally impaired, often after “many years of incorrect treatments or no treatments at all.”
Another Cambridge resident, Taylor Piskorski, told CBC News she cannot miss work as the breadwinner of her family despite endometriosis.
“On my days off, I am in bed. Like I am so exhausted,” she said.
CBC News reported that she had surgery in 2023 to remove a large cyst in her C‑section scar that doctors had first brushed off as a hernia, but her symptoms returned a year later and she has been “in a symptom flare now for six straight months.”
The Endometriosis Network Canada estimates it takes an average of five years to receive a diagnosis, and in Cairns’ case it took 17 years.
CityNews reports the average delay can be seven years, often because symptoms are dismissed as severe menstrual cramps.
Leonardi told CBC News that from the moment people show symptoms, they are often told, “Well, that is what you need to expect as a woman,” which can delay recognition that there is a problem.
Cairns said, “The longer you leave it, the worse it spreads,” and told CBC News her fertility is gone and that she and her husband are paying thousands of dollars “even for the opportunity” to try to have a baby.
Leonardi sees limited treatment options because “this disease has historically been underfunded and under recognized,” with most Canadian researchers being surgeons who cannot focus entirely on research.
Historically, surgery was the only way to confirm endometriosis, but he now diagnoses patients through imaging in his clinical practice.
CityNews reports that McGill University Health Centre created a program called EndoCares, run by Zachary and Nuyen, for patients with advanced or difficult endometriosis.
Professor Togas Tulandi of MUHC told CityNews that patients who have difficulty conceiving after trying for over a year, and those with persistent pelvic pain when medical treatment does not work, should consult a specialist.
