N.L. woman was 'bleeding for 365 days' before endometriosis diagnosis: 'Nobody really knew what was happening with me'

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Sharon Ozone was 12 when she began experiencing "debilitating pain." On CBC's "St. John's Morning Show," Ozon spoke about her 30-year journey to be diagnosed with endometriosis, a condition in which the tissue that normally lines the inside of the uterus (endometrium) grows outside of the uterus where it doesn’t belong.

"I had a lot of painful periods and it would last for two or three weeks in a month," Ozon, who lives in St. John's, N.L. told the CBC. "Nobody really knew what was happening with me."

Ozon is now organizing the province's first Run to End Endo charity event on June 2 in St. John's to raise awareness about endometriosis, with more runs taking place across the country in June.

Stephanie Blackwood, who runs the Newfoundland Endometriosis Support Group on Facebook spoke to the CBC about the struggles people with endometriosis face. "It almost gets to a feeling of 'you just don't have control over your own body.' It's separating you from that, which is really frustrating — not being able to control not just the pain but the hormones, the reactions. Not knowing what's real, what's not," she said.

Blackwood and Ozon hope people understand that the pain and symptoms of endometriosis last longer than a typical period. Ozon said she was "bleeding for 365 days" before she was diagnosed with endometriosis.

Yahoo Canada recently spoke to two Canadian women about their less common endometriosis symptoms and an endometriosis specialist on what treatment looks like.

What are the common symptoms of endometriosis?

According to the Endometriosis Network Canada, approximately two million Canadians live with endometriosis. Symptoms of the illness can include:

• Pelvic pain that can be constant and debilitating

• Bowel issues, including diarrhea, constipation and nausea

• Bladder pain

• Infertility and recurrent pregnancy loss

• Fatigue

Katie Luciani, the executive director at the Endometriosis Network Canada said it's important to note symptoms can be highly variable, meaning some people can experience a little pain, while others might have recurring symptoms that affect their everyday life.

"It is such an individual disease," added Luciani.

What are some less common side effects of endometriosis?

Genevieve Wojdyga, a 36-year-old living in Calgary, said she is well-accustomed to debilitating pelvic pain but also experiences less common symptoms which made her endometriosis diagnosis take years longer than she'd like.

In Canada, the average delay to diagnose is 5.4 years, but it can take as long as 20 years. This long wait to be diagnosed can lead to difficulties accessing treatment (surgical care in Canada can take up to 21 months), and it can impact Canadians' ability to work and live.

"I was experiencing ... fainting spells from pain levels and ocular migraines that would occasionally cause temporary blindness in one eye," said Wojdyga. She added that she also experienced loss of gallbladder, a flareup which affected the left side of her body, as well as weight gain and loss.

She added while there is information out there that shows how endometriosis can physically affect people, she doesn't think there's enough emphasis on how it correlates with someone's mental health.

"It is exhausting and it can feel bleak dealing with debilitating and excruciating pain."

Leah Myers is another Calgarian who experienced endometriosis-related symptoms for years before being diagnosed. The 33-year-old said she had extreme period pain, but also bouts of dizziness, brain fog and fatigue.

"It really affected my life," said Myers. "And I think when you talk about fatigue, people don't really understand, like they think about being a little tired. But with extreme fatigue, you can't drive. You can't do basic daily functions."

Myers said she continued to be perplexed by her symptoms even after receiving her diagnosis, but after she received treatment, or surgery, for her endometriosis in 2022, her brain fog disappeared. "It's like your brain is putting on a pair of glasses," she said.

According to the Canadian Association Medical Journal, other endometriosis symptoms that are less specific but are frequently reported by patients include abdominal pain and bloating, abnormal uterine bleeding, low back pain and fatigue.

Luciani said it's important to recognize the challenge of identifying endometriosis symptoms, and that there are often many comorbidities that coincide with the disease.

Barriers to treatment in Canada

After receiving a diagnosis, another barrier to care is access to laparoscopic excision surgery in Canada, which is one of the most effective treatments for endometriosis. Receiving surgical care can take up to 21 months.

Last October, Ontario NDP called on the provincial government to create a strategy to increase funding, education and awareness around endometriosis, which pushes people to seek care outside of the country due to long waitlists.

Myers was one of many women who chose to have her surgery outside of Canada. When she was told it would be over two years before she could receive treatment for her stage 4 endometriosis diagnosis, she went to the Bucharest Endometriosis Centre in Romania.

Luciani said removing barriers to care starts with education and diagnosis. Because so many women go to their general practitioners first and are sometimes left invalidated, all health-care providers should be educated on what endometriosis symptoms look like and the treatment paths.

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