A name for agony: Endometriosis in Canada

🔊 Listen to Post

Editor’s note: Kyler Emerson, who was interviewed for this article, was a previous editor in chief for The Runner. The Runner acknowledges and has taken steps to prevent conflicts of interest or potential bias from influencing the article. 

It was early spring in 2018, when Kyler Emerson’s partner, Emilio Saenz-Saldaña, walked into his parents’ house one Friday with a dubious looking stuffed sheep, much to Emerson’s surprise. They were house-sitting for the week, while Saldaña’s parents were away. In his hands, was the most eerie looking creature with odd eyes, an emaciated physique, and one foot. They named him Rambo. 

Saldaña spotted the $20 stuffed animal at Shoppers Drug Mart while waiting for take-out sushi. Little did he know it would become Emerson’s companion for years of surgeries to come.

The next day, Emerson hobbled through the University of British Columbia’s Hospital in sweatpants and a hoodie, nonchalant about the questionable gazes he received from strangers. He had his mother and new stuffed friend by his side, and was secretly envious of the attention Rambo was receiving from nurses. 

When the time finally came for the partial hysterectomy that was to remove the growing tissue outside his uterus, Emerson knew it was time to part with Rambo, left carefully in his mother’s care. 

His procedure was a partial hysterectomy involving only the removal of uterus, fallopian tubes, and cervix, leaving the ovaries. 

Often underdiagnosed and untreated, endometriosis affects approximately 10 per cent of people with uteruses, reads a statement on The Endometriosis Network Canada website. Endometriosis is a condition characterized by the presence of cells similar to the uterus lining growing outside the uterus. 

Inaccessible health care and long wait times in clinics across Canada have created barriers for many with the same condition to receive treatment. The Journal of Obstetrics and Gynecology Canada suggests that those with the condition reported a five-year wait to be diagnosed. 

Symptoms of the disease include severe pelvic pain, painful sexual activity, and problems with bowel movement and fertility, says Paul Yong, a B.C.-based gynaecologist and research chair in endometriosis and pelvic pain.

Causes of the disease include a combination of genetic and environmental factors. 

“There have been a few dozen locations in the human genome which we now know are associated with an inherited risk of endometriosis,” Yong says. 

“Endometriosis is a cancer that doesn’t kill you, because it spreads like a cancer but it’s not life-threatening,” Emerson says. “It just makes you want to die.” 

Emerson, who is transgender, had abnormal period pain ever since his second period, so he wasn’t shocked when he found out he had stage three endometriosis. His mother also had the disease, which further propelled his chances of having it. 

Misdiagnosed at his first laparoscopy, which is the only method to diagnose endometriosis, Emerson didn’t receive a diagnosis until he was 20 years old. 

He had to wait approximately eight months to see a gynaecologist at the BC Women’s Hospital, the only one in the province with a centre for pelvic pain and endometriosis. 

The process was also mentally challenging for Emerson, who at the time felt disoriented and perplexed going through a health problem that predominantly affects women. 

Emerson would usually feel pain a few days before his period and take ibuprofen and Tylenol to help manage it before his period started. His period would usually last for up to nine days every month. The Mayo Clinic suggests that menstrual bleeding usually lasts from two to seven days, however various factors determine the length of a period depending on age, varying from person to person. 

“You can’t do anything, you don’t want to do anything, nothing else matters but making that pain stop [during the first few days],” Emerson says. “It’s just not a way to live, it’s brutal just spending a huge chunk of your life wasted and it wasn’t a quality of living.”

Emerson had to wait before starting his treatment process at the age of 19, where he met with a gynaecologist at the BC Women’s Hospital and was put on progesterone which helped slow or stop the spread of endometriosis. 

“There’s a delay in diagnosis in Canada and the most recent is about five years. There’s a couple of consequences of that,” Yong says. 

Some risk factors of delayed diagnosis include untreated symptoms leading to other health problems such as chronic pain and issues with fertility. Symptoms, however, can be present throughout the body, like fatigue, problems with sleep, and pain in other parts of the body. 

“There’s a trend now where we’re trying to diagnose endometriosis without surgery with the goal of earlier diagnosis and there have been some recent advances in the use of ultrasound and MRI, which can diagnose some types of endometriosis quite well,” Yong says. 

The certainty of the diagnosis depends on how the disease has been diagnosed, and some studies have found that ultrasound and MRI guarantee a 95 per cent chance of accuracy when it comes to diagnosing endometriosis, Yong says. 

While non-surgical diagnosis based on a person’s symptoms is an option as well, it might not be as accurate as diagnosis based on MRI and ultrasound, Yong says.

Surgical treatment of the disease provides long-term pain relief for about 50 per cent of affected patients, an article in the Journal of Endometriosis and Pelvic Pain Disorders says. 

Since endometriosis is an estrogen dependent disease, the traditional form of treatment is often hormonal therapy, Yong says. 

“Teaching young people early about this common disease which [affects] one in ten individuals, it’s not uncommon, it’s a million people in Canada. So, getting people to have that information regardless of gender [is important].” 

Emerson, who got a partial hysterectomy to remove his endometriosis, dreads the day it might make a recurrence. The decision to keep his ovaries was arduous and challenging, but Emerson wanted to keep his options open in case he decided to have kids one day. The choice however increases his chances of redeveloping the disease.

“I just really did not want to wake up from that surgery because I was so convinced that my ovaries would be removed and that’s not what I wanted,” he says. 

There are not many resources to support trans people with the disease, Emerson says. While there are support groups for people with the condition, they are mostly catered to women. 

“The challenges that I have as a trans person with endometriosis [are] different … there’s some online [support] that you could find, but of course, that’s not the same as in-person,” Emerson says. “Humans bond with people they can relate to.” 

However, Emerson says the condition is debilitating for women who want to have kids.

Less attention is paid to diseases affecting women, Yong says. He said society is still getting used to the idea of talking about sexual health and function. 

“When it comes to providing resources for patients with chronic pain, I think our society has a lot better to do.”