Amy Schumer opens up about endometriosis, Cushing syndrome: What you should know

Two Canadian women open up about their experiences with endometriosis and their barriers to health care.

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Amy Schumer has revealed she's been diagnosed with Cushing syndrome. (Photo by Jamie McCarthy/Getty Images for Good+Foundation)
Amy Schumer has revealed she's been diagnosed with Cushing syndrome. (Photo by Jamie McCarthy/Getty Images for Good+Foundation)

Amy Schumer is opening up about being diagnosed with Cushing syndrome, a disorder in which the body produces too much of the hormone cortisol.

On Friday, the "I Feel Pretty" actress, 42, revealed she was going through major medical scans while doing on-camera press for her Hulu show, "Life & Beth."

"I was also in MRI machines four hours at a time, having my veins shut down from the amount of blood drawn and thinking I may not be around to see my son grow up," Schumer said in Jessica Yellin's "News Not Noise" newsletter. "So finding out I have the kind of Cushing that will just work itself out and I'm healthy was the greatest news imaginable."

The news comes after the "Trainwreck" star recently clapped back at comments about her appearance and "puffy" face on Instagram, as she opened up about having endometriosis.

"Thank you so much for everyone's input about my face! And you're right it is puffier than normal right now. I have endometriosis, an autoimmune disease that every woman should read about," the comedian wrote in her post.

"I also believe a woman doesn't need any excuse for her physical appearance and owes no explanation. But I wanted to take the opportunity to advocate for self-love and acceptance of the skin you're in."

Endometriosis is a health condition that affects 1 in 10 women in Canada. The tissue that normally lines the inside of the uterus, called the endometrium, grows on the outside of the uterus instead, where it doesn't belong. This can cause pain, especially during menstruation, and can lead to other health issues.

From face puffiness to pelvic pain, symptoms of endometriosis vary between individuals.

Yahoo Canada recently spoke to two Canadian women about their less common endometriosis symptoms and an endometriosis specialist on what treatment looks like.


What are the common symptoms of endometriosis?

According to the Endometriosis Network Canada, some common symptoms of endometriosis include:

  • Pelvic pain that can be constant and debilitating

  • Bowel issues, including diarrhea, constipation and nausea

  • Bladder pain

  • Infertility and recurrent pregnancy loss

  • Fatigue

Katie Luciani, the executive director at the Endometriosis Network Canada said it's important to note symptoms can be highly variable, meaning some people can experience a little pain, while others might have recurring symptoms that affect their everyday life.

"It is such an individual disease," added Luciani.


What are some less common side effects of endometriosis?

Genevieve Wojdyga, a 36-year-old living in Calgary, said she is well-accustomed to debilitating pelvic pain but also experiences less common symptoms which made her endometriosis diagnosis take years longer than she'd like.

In Canada, the average delay to diagnose is 5.4 years, but it can take as long as 20 years. This long wait to be diagnosed can lead to difficulties accessing treatment (surgical care in Canada can take up to 21 months), and it can impact Canadians' ability to work and live.

"I was experiencing ... fainting spells from pain levels and ocular migraines that would occasionally cause temporary blindness in one eye," said Wojdyga. She added that she also experienced loss of gallbladder, a flareup which affected the left side of her body, as well as weight gain and loss.

She added while there is information out there that shows how endometriosis can physically affect people, she doesn't think there's enough emphasis on how it correlates with someone's mental health.

"It is exhausting and it can feel bleak dealing with debilitating and excruciating pain."

Genevieve Wojdyga said she was dealing with endometriosis-related symptoms for years before she received her diagnosis. (Image provided by Genevieve Wojdyga)
Genevieve Wojdyga said she was dealing with endometriosis-related symptoms for years before she received her diagnosis. (Image provided by Genevieve Wojdyga)

Leah Myers is another Calgarian who experienced endometriosis-related symptoms for years before being diagnosed. The 33-year-old said she had extreme period pain, but also bouts of dizziness, brain fog and fatigue.

"It really affected my life," said Myers. "And I think when you talk about fatigue, people don't really understand, like they think about being a little tired. But with extreme fatigue, you can't drive. You can't do basic daily functions."

Myers said she continued to be perplexed by her symptoms even after receiving her diagnosis, but after she received treatment, or surgery, for her endometriosis in 2022, her brain fog disappeared. "It's like your brain is putting on a pair of glasses," she said.

According to the Canadian Association Medical Journal, other endometriosis symptoms that are less specific but are frequently reported by patients include abdominal pain and bloating, abnormal uterine bleeding, low back pain and fatigue.

Luciani said it's important to recognize the challenge of identifying endometriosis symptoms, and that there are often many comorbidities that coincide with the disease.


Barriers to treatment in Canada

Leah Myers, 33, has suffered from endometriosis-related symptoms like brain fog, dizziness and extreme fatigue. After Myers got surgery for endometriosis, she said it was like her brain was putting on a pair of glasses. (Image provided by Leah Myers)
Leah Myers, 33, has suffered from endometriosis-related symptoms like brain fog, dizziness and extreme fatigue. After Myers got surgery for endometriosis, she said it was like her brain was putting on a pair of glasses. (Image provided by Leah Myers)

After receiving a diagnosis, another barrier to care is access to laparoscopic excision surgery in Canada, which is one of the most effective treatments for endometriosis. Receiving surgical care can take up to 21 months.

Last October, Ontario NDP called on the provincial government to create a strategy to increase funding, education and awareness around endometriosis, which pushes people to seek care outside of the country due to long waitlists.

Myers was one of many women who chose to have her surgery outside of Canada. When she was told it would be over two years before she could receive treatment for her stage 4 endometriosis diagnosis, she went to the Bucharest Endometriosis Centre in Romania.

Luciani said removing barriers to care starts with education and diagnosis. Because so many women go to their general practitioners first and are sometimes left invalidated, all health-care providers should be educated on what endometriosis symptoms look like and the treatment paths.

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