Edmonton woman's experience with chronic pain shows need for better women's health education

Jaxyn Peterson experienced chronic pelvic pain without a proper diagnosis for years.

After approaching multiple family doctors and specialists and receiving a misdiagnosis of endometriosis, Peterson started feeling scared, frustrated and hopeless. 

"I was almost discouraged and scared of pursuing the doctors more, the specialists more, just because I was afraid of going to the doctor and afraid of finding answers," she said.

Peterson, a recent University of Alberta graduate, received the correct diagnosis during her third year of school: localized, provoked vulvodynia — a chronic vulvar pain condition.

The condition affects about eight per cent of the population, and more than one-quarter of people assigned female at birth, said Caroline Pukall, Queen's University psychology professor and one of Canada's leading vulvodynia researchers.

For nearly seven years, Peterson felt physicians dismissed her concerns. An emergency room nurse, family physician and women's health specialist each left her feeling as though her pain was normal, inexplicable or exaggerated. 

"I left there feeling really, really frustrated," she said.

"I know there's lots of pain and discomfort and changing in your body and becoming a woman… But I was like, 'It shouldn't be painful.'"

Misdiagnoses, dismissals common: experts

Peterson's experience is extremely common for people with vulvodynia, said Pukall.

People with vulvodynia are often told the pain is in their head because visible signs of injury do not appear upon exam, according to a study published in the BC Medical Journal in 2012.

Women often leave doctors offices feeling jaded and dismissed as a result, according to experts who spoke with CBC News.

A vulvodynia diagnosis is reserved for cases where, following comprehensive tests, there is no reasonable or observable explanation for the pain, said Pukall.

"That does not mean that the pain is not real. The pain is definitely real," she said.

"It's just that we're not able to actually see it because pain is very tricky and sometimes it can't be detected."

As a result, treatment options are not explored, patients suffer negative mental and physical health outcomes, and the patients' personal relationships can become strained, she said.

This occurs over a period of years, Pukall said, and "the pain isn't getting any better."

Knowledgeable health-care providers, resources vary by region

Health professionals have improved at diagnosing vulvodynia in recent years, but many doctors still do not accurately diagnose the condition, said Pukall.

A proper diagnosis largely depends on where in Canada someone lives, she said.

"Unfortunately, the curriculum across Canada for medical education varies greatly in terms of this particular condition and sexual health conditions overall," Pukall said.

"Sometimes people are in an area where there are no resources really, and their health-care provider is struggling to try to find answers for them."

Pukall is unaware of researchers in Alberta whose primary focus is vulvodynia, but there are practitioners, such as Dr. Magali Robert.

Robert, a professor of obstetrics and gynecology and pain medicine at the University of Calgary, agrees that medical education needs to improve to diagnose vulvodynia as quickly as possible. 

"Most people will come out of medical school thinking that essentially pelvic pain is endometriosis or dismenorrea, when in fact it's much more complex than that," Robert said. 

More resources need to be directed to support women with vulvodynia in Alberta, she added.

Meanwhile, Peterson feels a sense of relief because her current gynecologist validated what she was experiencing.

"He was the first one that actually was like, 'This is what's happening. This is where it is. This is what's causing you pain. This is how we can fix it,'" she said.

After nearly seven years of doctors' visits, Peterson is nearly pain-free, she said.