Saskatoon woman hopes endometriosis conference helps doctors learn about disease

SASKATOON – When she was 13 years old, Laura Cone was put on birth control to help ease the intense pain she experienced during menstruation. It took eight years for her to find out why it wouldn’t go away.

Cone, 30, was finally diagnosed with endometriosis when she was 21 years old. But the nightmare didn’t end there, she said. In the following years she struggled to get the help she needed to treat a pelvic-pain condition that had festered in her body for so long.

“It’s more common than heart disease and diabetes, yet most people don’t know about it,” Cone said.

The Saskatoon woman is co-organizing the province’s first endometriosis conference on Saturday at Royal University Hospital. Guests include a psychologist, yoga therapist and disability lawyer as well as a specialist from a pelvic-pain centre in B.C. as the keynote speaker.

Statistics show that around one in 10 women have the condition, which occurs when the lining of the uterus escapes the uterus and latches onto tissue and organs in the pelvic area and beyond.

It often causes severe menstrual pain and pelvic inflammation in patients; sometimes the bloating is so extreme it can resemble a pregnancy, Cone said. However, many women suffering with endometriosis struggle to become pregnant.

But it can go overlooked because of the vagueness of its symptoms, taking an average of 10 years to diagnose. As a result, endometriosis often gets misdiagnosed as other pelvic-related conditions, such as irritable bowl syndrome or pelvic inflammatory disease.

That misdiagnosis — combined with a lack of information about the disease — can keep sufferers in a helpless and debilitating state, Cone said.

She describes visiting doctor after doctor, explaining that something wasn’t right, and being made to feel like she was going crazy.

“It gets to your head when somebody who society reveres says, ‘there is nothing wrong with you, it’s all in your head.’ “

Cone said the condition is “extremely complex” because it can act so differently in every patient. She describes stories of people who live their entire lives not knowing their body was riddled with endometriosis, while others are bedridden due to one, small piece.

But the cause of endometriosis remains a mystery, and there is no cure. Cone said one reason why it is so hard to diagnose is because a diagnosis requires surgery, which many doctors are reluctant to do. While some doctors will conduct a test screening, Cone said the tests alone won’t always catch the disease.

“It can be microscopic. Just because it’s not found doesn’t mean that there isn’t a piece hiding behind your liver causing you grief,” she said.

Cone hopes the conference will also provide doctors with more information about the disease. She said there are three endometriosis specialists in Saskatchewan: two in Regina and one in Saskatoon.

But in order to reduce wait lists, she believes the province needs to train more specialists.

Dr. John Thiel, one of Saskatchewan’s specialists, agrees doctors can always learn more when it comes to the disease. He said the conference also aims to help women find alternative ways to treating chronic pelvic-pain other than surgeries and medication.

“Because oftentimes medical students, they’re only as knowledgeable as their teachers, and traditionally in medicine, we’ve done a poor job of teaching not only how to manage acute pain, but how to manage chronic pain.”

(CKOM)