Endometriosis activists rally at Quidi Vidi Lake to reach others who suffer from disease

Sharon Ozon says it took 30 years to get diagnosed with endometriosis and hopes events like the Run to End Endo can help change that for other people. (Elizabeth Whitten/CBC)

Crowds gathered around Quidi Vidi Lake in St. John's on Sunday to raise money and their voices for the uterine disease endometriosis.

It's often misdiagnosed and misunderstood, said Sharon Ozon, who organized the St. John's Run to End Endo.

Ozon said the fundraiser for The Endo Network is held in several other provinces and the money is used to provide educational resources and programs for people living with the disease.

"I just hope it brings awareness to the disease and it doesn't take so long to get a diagnosis. For myself, it took 30 years," Ozon told CBC News.

According to the World Health Organization, endometriosis affects an estimated one in 10 people with uteruses. The chronic disease happens when tissue similar to the lining of the uterus grows outside the uterus, which causes severe pain, as well as bloating, nausea and even infertility.

Ozon said she started experiencing pain when she was 12 years old, which began a series of trips to multiple doctors, some who she said told her it was all in her head, before being diagnosed in 2020.

Sunday's run was the first time Run to End Endo was held in St. John's. Endo said she's already planning for next year.

"I just hope we get more participants as the years go by because this is going to be an annual thing," she said.

"So between now and next year, hopefully we'll have more people aware of the disease, as well as maybe getting them diagnosed through their own physicians."

Stephanie Blackwood says she’d like to see the government collaborate with people who have endometriosis to help improve health-care outcomes. (Elizabeth Whitten/CBC)

Around 20 people signed up for the run this time around, and while Ozon hadn't tallied how much the run had raised, she said events held in other provinces already raised $40,000.

Stephanie Blackwood, who runs the Newfoundland Endometriosis Support Group on Facebook, ran in the event while also working as a volunteer.

"These events are crucial. They are key to awareness," she said.

Blackwood said on average it takes people in Canada 5.4 years to get diagnosed, which, she said, is a timeframe that needs to be improved. She said she would also like to see government collaborate with endometriosis support groups to improve medical care.

"This is a serious chronic illness that really has not been given the attention that it needs. It has not been talked about enough," said Blackwood.

"That's what we're trying to change. It's time for us to talk more about it."

Pushing awareness

Lisa Best, who participated in the event, said she's the third-generation in her family to live with endometriosis and was diagnosed 13 years ago. She said she was running to push for better research and availability of scans.

Endometriosis is a disease that people often misunderstand, thinking it is just a bad period, she said.

Lisa Best, one of 20 people who showed up on the shores of Quidi Vidi Lake for the Run to End Endo, says more people should be aware of endometriosis. (Elizabeth Whitten/CBC)

"You shouldn't be ashamed. Like, it should be talked about more," said Best.

"We talk about breast cancer, we talk about ovarian cancer. We should be talking about endometriosis more as well."

Tammi Patey said she suspects she has endometriosis but has been trying to get a diagnosis for a decade.

"I find women's health problems aren't talked about enough, so my big thing is raising awareness," she said.

Patey said many people are told painful periods are normal but that it's not normal to miss several days of work each month due to pain.

She pointed to the yellow shirt she was wearing — the colour for endometriosis awareness month — as another way to bring attention to the disease, as well as taking part in the run.

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