Ontario NDP calls for provincial plan on endometriosis, saying some seeking care outside country

The provincial NDP is calling on the Ontario government to create a strategy to increase funding, education and awareness around endometriosis, saying the gynecological disease is debilitating for thousands across the province who sometimes seek care outside the country due to health-care delays.

The plan also needs to tackle stigma around the illness, said MPP Jill Andrew, the NDP critic for Women's Social and Economic Opportunity in an interview with CBC Toronto. Andrew pointed out women, trans and non-binary people often deal with delayed diagnoses because physicians aren't properly informed about the disease or may not take their pain seriously.

"Health care is the government's responsibility. It has to ensure that every Ontarian can access health care without having to whip out their credit card," she said.

Endometriosis is a chronic condition where tissue that is similar to the lining of the uterus grows outside of the uterus, which can cause extreme pain, issues with infertility and can impact multiple organs, according to the Canadian Medical Association Journal.

About 10 per cent of people who have female reproductive organs are impacted by endometriosis, which amounts to about one million Canadians, it explains.

The NDP's move was pushed forward by the non-profit Endometriosis Events, which supports and advocates for people with the disease. Leah Haynes, who founded the organization with Tami Ellis, said they are specifically asking the province to update the health curriculum in public schools to include endometriosis and symptoms, since the disease can begin at a young age.

Haynes also said doctors need more education on the issue, adding her personal experience with the disease is that physicians are misinformed about it, which can leave people without proper treatment.

"We absolutely want the province and politicians to recognize this is not just about endometriosis awareness. We want moves to be made," she said.

According to research published in 2021 from the University of British Columbia and The Endometriosis Network of Canada, a non-profit and advocacy group, people often have their symptoms dismissed by health-care providers and face significant delays in getting a diagnosis and treatment.

MPP Jill Andrew said she will be asking the province to create a strategy to address endometriosis care and education. (CBC)

Andrew said she is tabling petitions this week with thousands of signatures that call for better endometriosis care.

"We will also be following up with the premier directly and with the Minister of Health because we want answers, we want to know how they plan on supporting these one out of 10 women and folks who menstruate, who are suffering," she said.

Woman travelled to U.S. for endometriosis treatment

Amanda Fruci, a communications professional who lives in Caledon, Ont., said she only received a diagnosis for her endometriosis in January 2023, at age 40, after dealing with painful symptoms since she was 11.

She said her pain was dismissed by physicians and she was told to change her diet or lose weight. Treatment for endometriosis can involve surgery to remove excess tissue or a hysterectomy, which is a removal of the uterus, according to Johns Hopkins Medicine's website.

Fruci said having the disease feels like "the inside of your body just being squeezed, or like your insides are being put through a vice."

"It just feels like no matter which way you move...there is a constant pain," she said.

Amanda Fruci, a 40-year-old woman from Caledon, Ont., said she had to travel to New Jersey to get treatment for endometriosis due to a surgical backlog in Ontario. (Submitted by Amanda Fruci)

That pain escalated by 2022.  Fruci said she visited the emergency room every month during her menstrual cycle, from October 2022 to January 2023, when she was finally given an appointment at a rapid access gynecology clinic, she said.

She said she was put on a waitlist to see a specialist and was given an appointment in October 2024. Instead of waiting, Fruci traveled to New Jersey and had a hysterectomy.

"I wish that our current government in Ontario would take [endometriosis] seriously. Why do I have to go out of the country to get the care that I need?" she said.

In a statement to CBC Toronto, the Ministry of Health said since 2018, it has added more than 8,000 new physicians, which includes increasing the number of obstetrics and gynecology specialists by 6.3 per cent.

It also referenced its healthcare plan released this past February that aims for faster access to care and hiring more healthcare workers.

The province's surgical waitlist has declined to "below pre-pandemic levels," with "nearly 80 per cent of all Ontarians receiving their surgery within target time," said Hannah Jensen, a spokesperson for the ministry in an emailed statement.

Timely diagnosis critical, says doctor

Dr. Mathew Leonardi, an advanced gynecological surgeon and ultrasound specialist at McMaster University Medical Centre in Hamilton, said being dismissed by healthcare providers is a common experience for those dealing with the disease.

"That constant disbelief when someone expresses their symptoms actually does propagate to the pain pathways that make people's pain experiences worse," he said.

"That delay in diagnosis is really going to create worse outcomes for people. So the earlier we can recognize the symptoms...the earlier we can start to discuss treatment," said Leonardi.

Andrew said she is concerned about the Ford government's investment in expanding surgeries in for-profit clinics and said the public system desperately needs investment for endometriosis and other illnesses that impact marginalized groups.

"We are hoping the Ford government will listen," she said.