Canada’s endometriosis sufferers rally for recognition
It was a Monday in April 2005 and Laurier Haughton had hosted her best friend’s wedding shower the weekend before. Still excited from the party, Haughton was in the middle of telling her colleagues at work all about the event until she was interrupted.
“It just felt like somebody had stuck a dagger through me. That was the start.”
The pain in Haughton’s abdomen was so severe, she was immediately sent home from work.
A year later, the tests from a laparoscopy returned and the 27-year-old was diagnosed with endometriosis, an incurable disease most often linked to infertility and severely painful menstruation. “In the beginning it was very much mourning to a loss,” explained Haughton upon hearing her diagnosis. “A body who used to treat me well has completely betrayed me. There was a lot of resentment, a lot of anger and depression.”
Other symptoms associated with the disease include pain in the abdomen and back, menstrual irregularity, nausea, vomiting, dizziness, fainting, painful bowel movements and/or urination and painful intercourse. It is not yet known what causes the disease, but some theories suggest estrogen levels may be a factor.
Catherine Maurer, registered nurse at the BC Women’s Hospital and Health Centre, says that although the disease affects women, it can have an impact on families and partners. “Dealing with someone who has pain a lot of times, people sometimes don’t get the understanding from their partners because you can’t see the disease,” she said. “It’s totally debilitating and it adds stress to people’s lives because of patients having to see doctors and take so much time off of work.”
According to The Endometriosis Network Canada, about 11 hours per person per week are lost due to debilitating symptoms. Although there is no cure, there are treatments available for women to manage painful symptoms and can vary from person to person. Relief drugs are most often used to manage the pain, like paracetemol, or hormonal treatments can be used to control ovulation and menstruation. There are also surgical procedures available to remove tissue buildup.
One out of every 10 women, or an estimated 800,000 women in Canada, is affected by what’s known as the “invisible” disease. And thanks to The Endometriosis Network Canada and Health Canada, the country is now joining Endometriosis Awareness Month, a worldwide event, for the first time this March.
Although Haughton was fortunate enough to be diagnosed within a year, the majority are not. The disease, which affects women between the ages of 15 and 50, is difficult to detect: It often takes seven to 12 years to diagnose.
Erika Myers-Khan waited eight years for her diagnosis.
“I was visiting doctor after doctor and I basically got the same tagline of ‘You are just weak and you have a low pain tolerance,’ and so on. And initially I thought this was something I would have to deal with.”
But the symptoms became more frequent and severe. Myers-Khan searched for yet another physician after her boyfriend’s aunt suggested what she was experiencing may be endometriosis. This time she found a surgeon who could help.
Myers-Khan was 24 years old when she was diagnosed in 2006, bringing her frustrating search to an end. “I was so relieved,” she said. “I just smiled at him. It was definitely a feeling of relief and validation that what I was going through wasn’t all in my head.”
Six years later Myers-Khan, along with several other women living with the disease, created The Endometriosis Network Canada. Myers-Khan, the network’s director, says this was out of necessity. “We created a voice for women across Canada who had Endometriosis,” she said. “Canada’s been a black hole in the endometriosis community. There are so many other countries that have been involved already.”
Lena Arabian, the network’s program director, experienced the same lack of awareness in Canada.
“When I started looking for information, all of the information was coming from countries other than my own,” she said. “There was nowhere to go that had specifically Canadian advice and information on how we could navigate our healthcare system with the disease that we have.”
After about two years of gathering petition signatures, Health Canada approved their request and created Canada’s first-ever Endometriosis Awareness Month. There was the Endometriosis Worldwide March (EndoMarch), and Toronto lit up the CN Tower in yellow and had people dressed in yellow as they skated in Nathan Phillips Square skating rink, all in an effort to raise awareness and garner support.
“We didn’t want the next generation of women or the current generation of women with this disease to feel so alone and isolated,” Arabians aid .
“It’s been a long wait,” said Myers-Khan. “But we’re so happy that it’s finally been recognized and the [Endometriosis] community is so happy now that their country is recognizing them.”