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Narrative endometriosis activists raise awareness of endometriosis' 'debilitating' disease

Narrative endometriosis activists raise awareness of endometriosis' 'debilitating' disease


woman holding her stomach
According to the Canadian Endometriosis Network, about 2 million people in the country have the disease. (Andrey Popov/Shutterstock)

People who suffer from endometriosis, a disease of the uterus, want more public awareness of the disease.

“Endometriosis affects every aspect of a person's life, not just physical pain, but also psychological and emotional impacts,” said Katie Luciani, executive director of the Canadian Endometriosis Network. It will affect us,” he said. She is calling for a national action plan to better understand the disease and put people on a path to diagnosis.

According to the World Health Organization, an estimated 1 in 10 people with a uterus has endometriosis. This chronic disease occurs when tissue similar to the endometrium grows outside the uterus, causing symptoms such as severe pain, bloating, nausea, and even infertility.

Luciani said people often wait years to get a diagnosis, sometimes decades to find out what's going on with their bodies.

Listen | Three activists living with endometriosis share their struggles before being diagnosed with endometriosis.

St. John's Morning Show18:33Endometriosis: Why 3 Advocates Want You to Know Menstrual Pain Isn't Normal

This morning we talked about endometriosis and why it's a concern because you probably know very little about this life-altering disease. We spoke with advocates Stephanie Blackwood, Sharon Ozon, and Katie Luciani.

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

“It's debilitating pain,” Dr. Ozon said. “I had a lot of period cramps, sometimes for two or three weeks a month, and no one knew what was happening to me.”

It took 30 years to be diagnosed with endometriosis, which included traveling to Ontario for treatment and seeing several doctors who repeatedly misdiagnosed her, she said.

A woman with short brown hair wearing blue glasses is smiling.
Sharon Ozon is organizing Newfoundland and Labrador's first Run to End Endo to raise awareness about endometritis. (CBC)

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

She said the pain was “sometimes so much so that I couldn't stand up and it even caused me to vomit.”

Luciani said she missed school, work and other important moments because she was told that her period was normal, that she needed to take painkillers, or that it was in her head.

“Unfortunately, this is a common story in the endometriosis community,” Luciani says.

It takes years to get a diagnosis

Both Ozon and Blackwood said they had to see several different doctors before a diagnosis was made.

Luciani said the first barrier to getting a diagnosis is that your doctor isn't familiar with endometriosis.

According to the Canadian Endometriosis Network, endometriosis affects 2 million people in this country, but there is a lack of knowledge about endometriosis in both the health care system and society, Luciani said. Stated.

Blackwood said she often hears complaints in Facebook support groups from people seeking information on how to deal with and treat the disease.

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

Even when a diagnosis is finally made, there is still a wait for treatment, including surgery, which is a big decision, she said. Different drugs have different side effects.

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

The disease causes physical pain, but it also has psychological aspects, including depression, anxiety and suicidal thoughts.

Woman with blonde hair and green jacket and black shirt
Stephanie Blackwood, who runs the Endometriosis NL support group on Facebook, said that in her early 20s, before seeing a doctor, she was struggling with daily life. (CBC)

Mr Blackwood said it could leave people feeling helpless.

“You almost feel like, 'I can't control my body.' It's taking you out of it, and that's really frustrating. Not only can you control the pain, but you can't control your hormones and reactions. What's going on? I don’t know what is true and what is not.”

Dr Blackwood said endometriosis does not only occur during menstrual periods, which often last an average of five days a month. People with endometriosis may have longer periods, and ovulation can sometimes trigger flare-ups. There were times when she only felt okay one week out of the month.

“My symptoms lasted for a full year before I had open surgery, which meant I bled 365 days a year,” Ozon said.

Ozon is also organizing the National League's first “Run to End Ends” event to raise awareness of endometriosis.

It will be held June 2nd in St. John's.

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