For six years, Calgarian Kristyn Harder was told by doctors and health professionals that her debilitating menstrual pain was "just girl problems."
"It started when I was 13, and I had excruciating periods right off the bat. … Cramps so bad that you can't breathe," Harder described.
The now 25 year old went to multiple doctors for help, but was told time after time that her excruciating symptoms were "something I shouldn't really worry about, just girl problems,'" Harder recalled.
"No one once suggested that it could be endometriosis. Nobody."
The pain got worse and became more frequent as she got older. Harder was forced to drop out of school and take classes online for an entire semester because the pain was so crippling. Her friendships crumbled.
Worse than the pain was the uncertainty. She had no idea what was wrong with her.
"I was having so many health problems and no one could help me, and no one could give me a sense of what was going on."
Fighting for a diagnosis
It wasn't until she was 19 that she was finally referred to a gynecologist because of a ruptured cyst.
At that point, Harder realized she needed to advocate for herself. She'd done her research, and all signs pointed toward endometriosis. She told her gynecologist she wanted to test for it.
After months of battling with her doctor to get a definitive diagnosis, Harder eventually convinced her gynecologist to perform a laparoscopy, a surgery that involves the insertion of a small probe into the abdomen so that a doctor can examine the pelvic area for abnormalities to diagnose and even treat endometriosis.
In Harder's case, surgeons were able to excise "advanced endometriosis."
"As painful as that was to hear, it was also a relief, because I knew that ... I had found the cause for my pain for so long," she said.
What is endometriosis?
Endometriosis occurs when tissues that usually line the uterine wall are found outside the uterus, where they attach to other organs, such as the fallopian tubes, colon or bladder.
As with menstruation, these tissues die off, but the blood has no way of escaping.
Symptoms range from abdominal cramps to suffering with cysts, gastric problems, fatigue, nausea and in many cases infertility.
Estimates suggest one in 10 women suffers from the chronic inflammatory disease, but Dr. Sony S. Singh, vice-chair of gynecology at Ottawa Hospital, believes the numbers could be much higher.
"The medical system is behind in terms of getting us an answer to how better to treat these women and better diagnose endometriosis," Singh said.
Difficulties of treatment
Part of what makes endometriosis so difficult to identify is that symptoms vary among women and can be confused with other conditions.
A diagnosis can only be confirmed through surgery, and many doctors are reluctant to perform one when a patient's symptoms can be treated with medication, said gynecologist Catherine Allaire with the Center for Pelvic Pain and Endometriosis in B.C.
Allaire works with an interdisciplinary team of gynecologists trained in advanced operations, physiotherapists and counsellors in B.C., but she admits that they can't keep up with the demand for their services.
The story is the same for Singh in Ottawa, where endometriosis wait lists are growing.
Singh wants to see the creation of centres of excellence in all major Canadian cities.
"We need better care in the country, be it in terms of treatment or surgery, and it has not been established as a priority."
'A huge scope of issues'
For Harder, diagnosis came as a relief, but after six years of physical suffering and self-doubt, her condition has evolved.
"It's not just endometriosis itself; it's what it turned into. It's a huge scope of issues," she said.
Harder has gone to physiotherapy, counselling, acupuncture and massage to cope with the chronic pain and the resulting emotional exhaustion that grew out of having to defend herself and her condition.
Now, she's speaking out in the hopes that other women won't have to wait as long to get the help they need.
March is endometriosis awareness month. You can find more information about the condition at Endometriosis Network Canada.