Endometriosis activists in N.L. are raising awareness of their ‘debilitating’ condition | CBC News

Those suffering from endometriosis, a uterine disease, want to see more national awareness around the illness.

“Endometriosis affects every aspect of a person’s life, not only physical pain, it’s that psychological, emotional impact,” said Katie Luciani, the executive director of the Endometriosis Network of Canada. She’s calling for a national action plan to promote a better understanding for the disease and a path to diagnosing people.

According to the World Health Organization, endometriosis affects an estimated one in ten 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, among other symptoms.

Luciani said people are often waiting years to get a diagnosis, waiting for decades at times to find out what’s happening with their bodies. 

LISTEN | Three activists who live with endometriosis share their struggles to get diagnosed:

Sharon Ozon of St. John’s said she started experiencing extreme pain when she was 12 years old.

“Debilitating pain,” said Ozon. “I had a lot of painful periods and it would last for two or three weeks in a month. And nobody really knew what was happening with me.”

It took her 30 years to get diagnosed with endometriosis, which included traveling to Ontario for care and seeing several doctors who kept misdiagnosing her, she said.

Stephanie Blackwood, who runs the Newfoundland Endometriosis Support Group on Facebook, said she was 23 when she started voicing her concerns to a doctor.

She said the pain “would sometimes, very often, take you off your feet, even to the point of causing vomiting.”

Luciani said she missed out on school, work and other important moments while being told that her period was normal, that she needed to take a pain reliever or that it was in her head.

“Unfortunately, this is just such a common narrative in the endometriosis community,” said Luciani.

Years to get diagnosed

Both Ozon and Blackwood said it took seeing several different doctors before they were diagnosed.

Luciani said a person’s first barrier to getting a diagnosis is if an individual’s primary care provider isn’t familiar with endometriosis.

According to the Endometriosis Network of Canada, 2 millions people in this country have the disease but Luciani said there is a lack of knowledge in both the health care system and society about endometritis.

On her Facebook support group, Blackwood said she hears a lot about people’s frustration who are looking for information on how to cope and treat the disease.

“We’re hearing people looking for answers and specifically, they’re looking for pain management techniques,” said Blackwood.

When people finally get a diagnosis, there are still wait times for treatment, which can include surgery, something she said is a big decision to make. Different medications also have different side effects.

Luciani said not everyone has the same symptoms and not all pain management techniques work on everyone.

The disease causes physical pain but there is also the mental aspect to it, like depression, anxiety and thoughts of suicide, she said.

Blackwood said it can make people feel powerless.

“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.”

Blackwood said endometriosis isn’t something that only happens during a period, which for most is an average of five days a month. People with endometriosis can have longer periods and ovulation can also cause flare ups. There was a point when she only had one week out of the month where she felt alright.

“My symptoms lasted for a full year before I got the incision surgery. So I was bleeding for 365 days,” said Ozon.

Ozon is also organizing N.L.’s first Run to End Endo event which she said is to bring awareness to endometriosis.

It is taking place on June 2 in St. John’s.

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