More than just cramps: Benton woman tells her story of living with endometriosis

Ashley Humby hates hearing “it’s just a bad period.”

The 31-year-old woman from Benton, N.L., lives with Stage 4 endometriosis: a severe case of the condition in which cells similar to those in the inner lining of the uterus grow outside the uterus.  When Ashley Humby was a young teen, she knew something was wrong. But doctors couldn’t find anything. Until at 18 year old – after fighting years to be heard – she was told she has endometriosis. The CBC’s Melissa Tobin bring us her story. 6:24

More than a bad period

Humby says the chronic illness goes way beyond gynecological issues.

“I haven’t had a period in 14 years. I’ve been in a medical menopause,” she said. “That’s messing with your hormones, your personality, your mental health, your physical health. It’s been no joke. It’s been really rough.”

She takes a monthly shot of Lupron — a mild chemotherapy drug also used for prostate cancer — to suppress the advancement of the disorder. And she’s had countless surgeries, with another one scheduled for later this year.

Humby says she’s had countless surgeries over the years due to endometriosis, with more to come. (submitted )

This one is to correct adhesions she’s developed due to endometriosis — or “endo” as it’s sometimes called — to detach her bowel from her uterus. 

“That’s a very risky surgery, and I don’t want to have to do that. But when you’re talking about your insides sticking together, I don’t have much of a choice here.”

Years before diagnosis

Humby struggled for years for a diagnosis. As a teen, she complained of serious pain in her bowels, chest, back and kidneys. Emergency room visits would sometimes lead to a shot of morphine, but the pain would come back days later. Humby says she was made to feel like she was there just for the drugs.

Humby has a cupboard full of medications to deal with her chronic pain. (Melissa Tobin/CBC)

It wasn’t until she was 18 years old that she learned the name of her disease. 

But her story isn’t unique; the average time it takes for a diagnosis is nine to 10 years. 

Lack of endo experts 

Dr. Jamie Kroft, one of about 20 endometriosis specialists in Canada, has a wait list going into next year. 

She says there are two main reasons why endometriosis takes so long to diagnose. 

Dr. Jamie Kroft, an endometriosis specialist at Sunnybrook Health Care Centre in Toronto, is one of about 20 doctors in Canada who are experts in the field. (submitted)

One is that women are conditioned to think bad menstrual cramps are normal. Another is that many physicians minimize the symptoms.  

“Patients may present to her family doctor with painful periods, and the family doctor says, ‘Well, that’s just a normal part of being a woman,'” and it’s treated with anti-inflammatory drugs or birth control, said Kroft, of Sunnybrook Health Care Centre in Toronto.

But Kroft says there are more people training in the sub-speciality. And with the new Canadian Society for the Advancement of Gynecologic Excellence, Kroft believes it is getting better. 

Our health system is letting us women with endometriosis down. It’s letting us down, and it’s not right.– Ashley Humby

For Humby, the wait has been long enough.

“Our health system is letting us women with endometriosis down. It’s letting us down, and it’s not right,” she aid.

“It’s time for this to change.” 

Humby has a yellow ribbon tattoo on her right arm to raise awareness about endometriosis. It reads, ‘My pain is a song only I can hear.’ (Melissa Tobin/CBC)

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