White Coat, Black Art

Extreme period pain is 'not just part of being a woman,' says women's health expert

Women's health expert Dr. Catherine Allaire says celebrities like Lena Dunham, who recently wrote about undergoing surgery to treat her endometriosis, can help raise awareness of this serious condition.
Actress Lena Dunham wrote in Vogue magazine about her controversial decision to have a hysterectomy at the age of 31. It was her 10th surgery in 10 years. (Danny Moloshok/Reuters)

The pain and suffering caused by endometriosis isn't normal, and doctors need to start taking the disease — and the women who have it — more seriously, says a leading expert in women's health.

"I think the important thing is to ... not normalize severe menstrual cramps and say it's just part of being a woman and just deal with it," Dr. Catherine Allaire told Dr. Brian Goldman, host of White Coat Black Art.

"There's a certain social acceptance of women's pain as being normal," said Allaire, who is director at the B.C. Women's Hospital's Centre for Pelvic Pain and Endometriosis.

She is one of a small number of experts doing research on endometriosis. An estimated one in 10 women in Canada suffers from the painful and debilitating condition.

Ever wonder what endometriosis can feel like? Watch this video by journalist and poet Danielle d'Entremont. 1:59

She said that when patients visit her clinic in Vancouver, they've often already seen up to five physicians who were unable to identify or diagnose their condition.

It often does undiagnosed for years or even decades, thanks in part to societal misunderstandings about period pain. Discussions about endometriosis are relatively few and far between.

Dr. Allaire says our lack of understanding of endometriosis can even stretch back multiple generations: mothers who have lived their entire lives with the condition — undiagnosed — may have daughters who suffer from it as well.

"The mothers are telling their daughters, 'Well, it's just normal to have these bad cramps, and so you just have to get through it and it'll be fine," she told Dr. Goldman.

"I think it's important to get the message out, especially to young girls and young women out there, that it's not normal, and it's something that's worth bringing attention to your family physician."

Research money, public awareness needed

Despite affecting up to a million women in Canada alone, endometriosis is a relative mystery in the medical community. Dr. Allaire says more money is "finally" being put into endometriosis research, but calls it "a drop in the bucket" compared to other, more well-known diseases and conditions.

"We're struggling with getting research dollars to investigate the proper treatments to find a cure," she said. "It's still considered a mystery, and understanding it better will lead to a cure."
Dr. Catherine Allaire, director of the Centre for Pelvic Pain and Endometriosis at the B.C. Women’s Hospital, is one of only a few experts in Canada studying and treating endometriosis. (Submitted by Catherine Allaire)

Why the lag in research and public awareness? When asked, Dr. Allaire didn't mince words.

"To be blunt, I think [because] it's a women's condition that's not deadly. Even deadly women's conditions, such as breast cancer [and] ovarian cancer took a long time to get money" for research and support, she said.

A handful of studies in the U.S. and Europe has estimated that endometriosis results in billions of dollars of lost productivity — including the cost of treatment, sick leave, and lasting emotional and social stress.

"For many women who have endometriosis, the disease means suffering from chronic and debilitating pain. Women frequently reported pain severe enough to interfere with work productivity, and maintaining employment, social activity, family responsibilities, and daily activities," said one 2006 report.

Dr. Allaire declined to comment specifically on Dunham's endometriosis case, but noted that celebrities have an "extremely valuable" ability to bring awareness of the disease to a wider audience.

"There's a need to acknowledge that women's pain is real — that it's not a normal thing to have debilitating menstrual cramps. This needs to be stopped and treated and addressed at all levels, for sure," she said.