12 years with no diagnosis: Edmonton woman describes what living with endometriosis has meant for her

Meghan Thomas lived with chronic pain for more than a decade before being diagnosed with endometriosis. 

"I started putting all of my symptoms together and realized that this is a lot more serious than the doctors are taking it," she told CBC Edmonton's Radio Active Monday. 

Endometriosis is a chronic condition where tissue similar to the lining of the uterus begins to grow outside of the uterus. There is no known cure for Endometriosis. 

Thomas, 28, takes 11 different medications to manage her illness and is waiting for a treatment plan to stop her endometriosis from spreading. But she already knows she'll need a full hysterectomy. 

"I'm mourning the loss of motherhood, the fact that I'm never going to be able to complete my life because I live in chronic pain every single day," she said. "And I don't know how I'm going to feel when I wake up the next day."

Because of her endometriosis, Thomas' immune system is more susceptible to irritants, causing spontaneous urticaria, where her eyes swell and she breaks out in hives.

Dr. Fiona Mattatall, an obstetrician and gynecologist in Calgary, said there isn't an easy way to diagnose endometriosis

"It doesn't show up on its own, or in an ultrasound," Mattatall said. "It doesn't show up in blood tests."

The only way to know for sure is through laparoscopic surgery, where a surgeon uses a camera, inserted through the abdomen that looks down into the pelvis. 

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Even though endometriosis is relatively common, affecting one in 10 women around the world and more than a million in Canada, according to advocacy group EndoAct Canada, it isn't given the same level of research as other conditions.

"I think a lot of it has to do with the fact that it's a condition that primarily affects women," said Kate Wahl, volunteer executive director of EndoAct Canada. 

"We know from other research that from research that's been conducted that women presenting with pain are often treated differently from men who present with pain, and their pain is more frequently dismissed."

Thomas saw six family doctors, two gynecologists and a multitude of specialists – an iron specialist, ultrasound technicians, hospital doctors  – before she was diagnosed. 

People living with this condition can wait up to 20 years for a diagnosis and some sort of treatment plan, said Wahl. The waitlists have been further pushed back because of the COVID-19 pandemic. 

Thomas was diagnosed after 12 years and her condition has worsened and spread to other internal organs. 

"Once it spreads to your internal organs, it's very hard to manage," she said.

"Meanwhile, this illness is still wreaking havoc in my body."

Calling for a national action plan

EndoAct Canada, an organization that promotes awareness for endometriosis, wants the federal government to create an action plan. 

The Act for Endo Campaign, which launched in January this year, is encouraging people living with endometriosis to write to their local members of parliament about the issue. 

The action plan they are pushing for is similar to the ones implemented first in Australia, and later followed by France, England and Scotland. 

"It targets three pillars," Wahl said. "Improved access to care across the country, increased awareness and education for health care providers and the public, and finally, more research." 

Wahl emphasized the need for awareness for health-care providers. 

"The main symptom is pain," said Mattatall. "And pain is something that doesn't show up on a blood test, it's someone's experience. So historically, women have had pain ignored or downplayed."

But things are changing, Mattatall said. 

"It is a really good sign that we are seeing more awareness," she said, noting that March is endometriosis awareness month.