White Coat, Black Art

Endometriosis: My painful search for answers

Danielle d'Entremont, a young woman who was recently diagnosed with endometriosis, shares her six-year journey to find out what was wrong with her, and the discoveries she made along the way about how society discriminates against women's pain.
'After over 10 years of being misdiagnosed, brushed off, given medications I didn’t need, being told I should try relaxing more, being told my pain was normal, I decided to take my health into my own hands,' said Danielle d'Entremont. (Submitted by Danielle d'Entremont)

I've been sick for a long time. It's somewhat of a running joke for my family and friends.

I have been diagnosed with irritable bowel syndrome, Crohn's disease, C. difficile, chronic kidney infections, pelvic inflammatory disease, stomach parasites, lactose intolerance, gluten intolerance and celiac disease. For a while, I thought that it was all unconnected. But no.

It took about six years and more than 20 doctors to get a definitive answer to my mystery ailment. In the summer of 2017, I was given firm empirical diagnosis: endometriosis.

Endometriosis is when endometrial-like tissue develops outside of the uterus to form lesions, cysts, nodules, and other growths. The lining can cause scarring of the organs, internal bleeding, bowel problems, and infertility. And pain. Lots of pain.

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

Unfortunately, the long wait time for my endometriosis diagnosis is typical. The average diagnosis takes about eight to 10 years. During that time, women typically go through seven to 10 doctors. Yet, endometriosis is quite common. An estimated one in 10 women have endometriosis. That's an estimated 176 million women worldwide.

My diagnosis was a relief. It gave me an answer, but it also made me angry. How was it that no one had ever mentioned endometriosis to me sooner? Why did it take the better part of a decade of being sick to even hear the word when this illness is so common?

What I discovered is that women's pain is not taken as seriously as men's pain.

A National Institute of Health study in the United States found that women tend to wait 16 minutes longer than men when they are receiving pain medicine in emergency rooms. According to the same study, women are up to 25 per cent less likely to receive opioids when they are dealing with pain.

Women's health is still taboo

But I wonder if part of the problem is also that it's still taboo to talk about women's health.

The International Women's Health Coalition did a survey in 2016 that found more than 5,000 different euphemisms for menstruation across the world.

They're talking about the weird workarounds and slang like "Aunt Flow is in town," or "surfing the crimson wave." Or, it's "that time of the month," also known as "shark week."

Danielle d'Entremont in hospital with her boyfriend Paul Dyck. (Submitted by Danielle d'Entremont)

It's no wonder women have so much shame around our bodies. We're taught that it's gross to even talk about them.

Ads for feminine hygiene products prefer a blue fluid so we don't even have to look at fake periods.

We've built a culture so deeply rooted in shame around women's bodies that we cringe when someone says the word period.

Shannon Cohn is one of the women trying to break the silence around having endometriosis. Her recent documentary Endo what? is aimed at helping women with the disease take control of their health. On the One Part Podcast, which focuses on women's health, she said something that really resonated with me.

"It's really, I think it's a feminist issue as well. This disease … goes to the core of being a woman. The societal taboos against menstruation. And it's one of the last great health taboos," Cohn said.

"Endometriosis and female health issues that involve below the waist are the last great health taboo that people still feel a little uncomfortable talking about," she said.

'This is a global health crisis'

We need to start having conversations about women's health. Period. No pun intended.

We need to start talking about these things so that women don't have to wait a decade to get diagnosed with a health issue that one in 10 women have.

Or, like me, wait a decade to even hear the word endometriosis, let alone know what it is.

This is not just a women's health issue.

If you ask me, this is a global health crisis.