A Cambridge endometriosis advocate’s petition calling for change in how the disease is treated and recognized in Canada has received sponsorship by a member of Parliament.

Laura Cairns has lived with endometriosis for almost two decades. Her petition, which was accepted by MP Elizabeth May, calls for the recognition of endometriosis and adenomyosis as disabilities if they limit someone’s ability to work, more federal funding for research and earlier diagnoses.

“I feel that it is long overdue and I hope that something good comes of this,” Cairns told CBC News.

Endometriosis is a chronic disease, affecting approximately one out of 10 women worldwide. Tissue similar to the lining of the uterus grows outside the uterus, often found in the pelvic area. Less commonly, the tissue can grow on the bladder, lungs and brain. Symptoms include pelvic pain, pain during sex, bowel symptoms, bladder symptoms, fertility issues and fatigue.

“Personally, my life has been destroyed by this disease,” said Cairns.

According to the Endometriosis Network Canada, it takes an average of five years before a diagnosis is made. In Cairns’ case, it took 17 years.

Green MP fully supports the petition

After reaching out to four MPs, who declined to accept her petition, Cairns said May was her last hope.

“I’m very grateful to her that she’s willing to bring this to the table and to fight for it.”

CBC News reached out to May, but we were unable to connect with her. Instead, Mike Morrice, Deputy Leader of the Green Party of Canada, spoke on her behalf, saying May fully supports the petition.

“As Greens, we want to see a higher priority and more funding placed behind research to improve women’s health, want to see more advocacy when it comes to lifting up the importance of addressing women’s health, and also want to see the broadest possible definition for including more conditions as a disability, including invisible disabilities,” said Morrice.

Morrice says endometriosis is meant to be covered under the Canada Disability Benefit, but access to the benefit is limited to those who qualify for the disability tax credit. He says a broader definition for disability is needed to ensure women can receive financial support.

“It’s maybe 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,” said Morrice.

Cairns says she’s trapped in an endless cycle of not being able to afford care and not being able to afford to take time off work. 

“I am low-income because of endometriosis. So it’s just this constant back and forth of you can’t work because you’re in so much pain and you’re more likely to lose your job.”

Dr. Mathew Leonardi, an advanced gynecologic surgeon and ultrasound specialist at McMaster University, Hamilton Health Sciences, says about one in six women lose work due endometriosis and adenomyosis.

He says he has a lot of patients who are functionally impaired from the two conditions.

“Generally speaking, it’s from the chronic pelvic pain that comes from those diseases due to many years of incorrect treatments or no treatments at all,” Leonardi told CBC News.

Taylor Piskorski, a Cambridge resident, suffers from endometriosis and says she doesn’t have the option to miss work as the breadwinner of her family.

“On my days off, I am in bed. Like I am so exhausted,” Piskorski said.

In 2023, Piskorski underwent surgery to remove a large cyst in her C-section scar, which she said doctors previously brushed off as a hernia.

A year later, her symptoms came back and have continued ever since.

“I’ve been in a symptom flare now for six straight months,” said Piskorski.

Because the symptoms of endometriosis can be varied, it often isn’t recognized until years later. Dr. Leonardi says women are often told their level of pain is normal.

“From the moment that people start to exhibit symptoms, it’s not always clear to them that there is a problem because they’re told, ‘Well, that is what you need to expect as a woman.'”

Cairns hopes the petition will help women receive diagnoses earlier.

“The longer you leave it, the worse it spreads,” she said. “My fertility is gone. My husband and I have been trying to have a baby, and we’re now having to pay thousands of dollars even for the opportunity for that to happen.”

Historically, the only way to know about endometriosis was through surgery. Dr. Leonardi is one expert working to change this, and diagnoses people through imaging tests in his own clinical practice.

Treatment options for women

Finding help to remove or relieve endometriosis can often be a complicated process.

Kysha Phillips lives in Cambridge and has stage four endometriosis on her bowels.

She was diagnosed in 2024, after suffering from symptoms for the past 10 years, and is still looking for a specialist that knows how to remove endometriosis on her bowels and complete a hysterectomy.

“I can feel it from the very beginning of my bowels all the way, like to the end because it’s filled with scar tissue and lesions and stuff like that,” said Phillips.

She says the wait time can be up to two years before even getting a phone call or consultation from a specialist.

Dr. Leonardi says there are limited options to treat endometriosis. “This disease has historically been underfunded and under recognized. So there hasn’t really been that much funding that has gone to research to be able to identify new treatments.”

He says most people in Canada who research endometriosis and adenomyosis are actually surgeons.

“We don’t usually have the ability to focus our efforts entirely on research, but if we have the opportunity to receive research funding, whereby we can build our research teams, and those research teams can involve people who are interdisciplinary in nature.”

In order for the petition to be tabled in front of the House of Commons, 500 signatures are needed. Once it’s tabled by May, the government has 45 days to respond.

Cairns hopes to get at least one million signatures on her petition.

“There are so many people who are absolutely desperate, and I am one of them.”