Living with endometriosis: Meet the illness no one is talking about

When Cassandra Earle was 13, she woke up with excruciating pain in her abdomen that left her unable to move. 

When this started happening every month, Earle went to see a general practitioner to get help. However, her doctor said she was “just having bad periods,” she recalled.

Earle missed out on many school and social events as a teenager. She struggled to explain to her friends what she was going through. 

After years of misdiagnoses and frustration with the medical system, Earle received laparoscopic surgery. At age 17, she finally got an official diagnosis of endometriosis. 

Endometriosis is a condition where tissue — similar to the tissue inside the uterus — grows outside the uterine walls. This results in inflammation that can be extremely painful throughout the menstrual cycle. It can also cause symptoms like heavy bleeding, painful intercourse and infertility.

Endometriosis affects an estimated one in 10 women during their reproductive years. The average time it takes to receive a diagnosis in Canada is five years. For many people, it takes much longer.

A diagnosis can be hard to get because it can only be done through laparoscopic surgery. Many doctors dismiss young patients like Earle and tell them they are just having bad periods.

There is no known cure for endometriosis. Treatment plans to ease side effects include pain management, hormone medication, surgery to remove extra scar tissue, hysterectomy and induced menopause.

Living with endometriosis

Karlee Pagliacci, 37, also began experiencing endometriosis symptoms at age 13. She started birth control to manage the pain and bleeding at 14.

She wasn’t diagnosed until she was 28, after a year and a half of pregnancy attempts. Pagliacci decided to have surgery to remove some of the endometrial tissue, in hopes of being able to have children. 

“After the laparoscopic surgery, the doctor told me she was only able to remove about half of the lesions,” Pagliacci said. “It had essentially glued my organs together, and it was too dangerous to remove it all as it could cause potential damage to other organs.”

Pagliacci began IVF treatments after the surgery and was able to get pregnant with twins on her second round. 

Just over a year after the birth of her twins, she became pregnant without IVF. 

“It was a big surprise, as I had been told I had a less than five per cent chance of conceiving naturally,” she said.

Though some studies show symptoms of endometriosis can be relieved after pregnancy, Pagliacci experienced the opposite. 

“After having three kids, the pain of endometriosis has slowly gotten worse and worse. I’m at the point now where I experience symptoms about half of the month. I will likely suffer with some degree of symptoms until my period ends in menopause,” she said.

Pagliacci said she has tried numerous treatment plans with varying levels of success. 

“It seems like my only option is to keep trying different pills that cause other symptoms I’m forced to deal with,” she said. “I spend a lot of time worrying about how the pain and excessive bleeding will interfere with my plans. But I don’t want to let it take over my life more than it already has.”

Reproductive health advocates

Not only is endometriosis a barrier to enjoying a pain-free life, but it is also critically under-researched and over-stigmatized.  

Earle, now 20, said doctors continue to dismiss her even though she has an endometriosis diagnosis on her medical file.

The increased burden on the Ontario medical system during the COVID-19 pandemic resulted in cancelled appointments and ultrasounds for many patients deemed non-essential. This includes endometriosis patients.

In September 2020, Earle said she was in immense pain, struggling to access support and experiencing a bout of hopelessness. 

To cope, she started an activity that would soon inspire others to find support.

“A friend suggested I make an Instagram account, like a diary for family and friends, because I have a really hard time saying I need help,” Earle said.” It was just supposed to be for family and friends, but then I started posting a few more informational things because people had questions about these health issues.”

Earle started @her_uterus on Instagram and TikTok, where she posted information about endometriosis and other reproductive health issues.

“I was not meant at all to be any sort of influencer,” she said. “I made TikToks because it was an outlet for me to use humour. And then one of them got half a million views one day. It was so insane, me making a joke about my chronic illness [was] blowing up on TikTok and Instagram.”

Social media has been an important part of Earle’s experience with endometriosis. Because of her platform, she has been invited to speak on reproductive wellness panels and partner with menstrual health organizations.

“I’ve connected with people from all over the world,” Earle said. “I get the most wonderful messages every day. People tell me, ‘You helped me feel seen. You help me through this. I think that I can fight this because of you.’ That’s why I do it. I love what I do. I can’t believe that I get to do this every day.”

Earle said she wishes there was an account like @her_uterus when she was 13 and struggling with chronic health issues. Now, seven years later, she wants to be that person for other young people to show them they’re not alone.

Continuing the conversation 

Other organizations focused on endometriosis have formed in the last few years. The Endometriosis Network Canada (TENC) is a non-profit that provides support and resources to help people with endometriosis. It’s the only non-profit of its kind in Canada.

TENC offers monthly support groups over Zoom: one Canada-wide, and one focused on Toronto.

Their website has resources such as a list of doctors available by province who specialize in endometriosis diagnosis and surgery and a list of questions you can bring to your doctor. 

Their blog has articles on topics such as managing endometriosis for trans and nonbinary individuals. According to the article, “Finding accurate and up-to-date information and research can be challenging enough for people with endo, but the gendered language on most websites and clinical studies can make it overwhelming and dysphoria-inducing.” 

Endometriosis for trans and non-binary people is even more under-researched and over-stigmatized than it is for cis women. 

Organizations like TENC are attempting to break down these barriers in the health care system.

For Pagliacci and Earle, an earlier diagnosis and treatment could have made a huge difference. People are living in pain, undiagnosed and without accessible health care. 

Earle’s advice for those struggling with endometriosis is to “take care of yourself.” 

“Have things that you are passionate about, that you love, so that your personality isn’t consumed by [endometriosis], because there’s so much more to you than your illness,” she said.