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Endometriosis: a chronic pain condition that affects 176 million people worldwide

Last Updated Apr 10, 2021 at 4:43 am MDT

Photo courtesy of THE CANADIAN PRESS/AP-Teresa Crawford
Summary

176 million people around the world live with the chronic pain condition endometriosis

Mar. 27 is the cross-Canada Endo March, supporting the 10 per cent of women and girls living with endometriosis

CALGARY – March is Endometriosis Awareness Month.

Endometriosis is an inflammatory chronic pain disease, causing tissue similar to the endometrium — which lines the uterus — to grow elsewhere in the body.

According to The Endometriosis Network (TEN), approximately one in 10 women, girls, and transgender people have the condition. A common misconception about endometriosis is that it only affects reproductive organs, like the uterus and ovaries.

“Before, there were talks that the only organ in the body that hadn’t been affected by endometriosis was the spleen,” said Katie Luciani, the executive director of TEN. “But about two or three weeks ago research came out that they’ve actually found it on the spleen as well. So now this is actually considered a whole-body disease.”

Endometriosis causes a variety of symptoms, including but not limited to: chronic pain, irregular menstrual cycles, infertility, chronic nausea, and issues with digestion.

Dr. Priya Patel, an endometriosis specialist with the Royal Alexandra Hospital in Edmonton, says these symptoms are often overlooked due to a general lack of knowledge surrounding the disease.

“’Well they’re just my periods, they’re supposed to hurt,’” is something Patel says she often hears from people. “Living with that understanding I think is the saddest part. Because sometimes they don’t even seek help, or when they do seek help it’s often mistaken as something that is just a normal course of periods.”

LISTEN: 660’s Devon Banfield speaks with Dr. Priya Patel

The pain caused by the condition often leads to reduced participation in society and can make it difficult to maintain work.

Research shows that endometriosis costs the Canadian economy close to $2 billion a year in lost revenue, reduced productivity, medical costs, and other expenses associated with the disease.

“It’s estimated that $1.8 billion in annual cost to the Canadian society is due to endometriosis because it affects reproductive age women, and those are the most productive women in society,” said Patel.

Younger people are also deeply impacted by the condition, with TEN reporting that youth experiencing endometriosis symptoms are 10 times more likely to miss school.

Anna Mae Alexander is an endometriosis advocate from Calgary. She lives with the condition herself, experiencing the onset of symptoms when she was only in grade two.

“I started experiencing symptoms when I was eight years old,” Alexander told 660 NEWS.

“When I was 10 years old, I went to the hospital in pain and was told that it was psychiatric and received psychiatric care for the next two years. It wasn’t until I was 35 that a doctor told me that I might have endometriosis.”

Alexander uses social media and film as mediums to spread awareness about the condition. Throughout the month of March, Alexander has been uploading endo-themed content on her TikTok and is currently applying for grants to create a documentary to educate people about the condition.

“There are many people born with a uterus who have symptoms that they think are normal — but they’re not,” she said, adding that there’s awareness to be raised in the medical community as well.

“Maybe more doctors or medical students would be aware. Because when I did get to an endometriosis specialist, she looked at me, she looked at my chart, and she said, ‘I don’t think that’s IBS, I think that’s endometriosis.’”

Alexander’s lengthy journey to diagnosis is not uncommon. TEN reports it takes an average of seven to nine years for a Canadian to be diagnosed with endometriosis. Many women, like Alexander, find themselves waiting decades before they are diagnosed.

Patel says there are a variety of reasons that endometriosis takes so long to diagnose.

“There’s no single agreed-upon, simple diagnostic tool for us. For instance, to diagnose diabetes, I can do a test and tell you that ‘yes, you have it’ or ‘no, you don’t,’” said Patel. “To for sure say that someone has endometriosis, they have to have surgery.”

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Chelsea McEwen is another woman from Calgary who lives with endometriosis. She says that this condition has a variety of impacts on sufferers.

“You feel invisible. People don’t really believe that you’re in as much pain and as sick as you are, because it’s invisible,” said McEwen. “You look fine. That’s really hard.”

Alexander agrees with this sentiment.

LISTEN: 660’s Devon Banfield speaks with Katie Luciani, Anna Mae Alexander, and Chelsea McEwen

“Often I live with a baseline of pain that I don’t think people are aware that I live with,” Alexander said.

“There are days that I’m up all night in pain and then you get up in the morning and you do your hair and you shower and go to work. You try to function and pretend like everything’s fine when it’s really not.”

McEwen believes self-advocacy is the first thing young people who may have this disease need to learn.

Because of the stigma surrounding menstrual pain and gynecology, she believes people with endometriosis often feel uncomfortable discussing their pain. This is something she says must change.

“Pelvic pain isn’t normal, but talking about it should be,” McEwen said, a thought that is echoed by TEN.

The network’s Executive Director, Katie Luciani, says this is a time to spread accurate, educated information, instead of old myths and to “come together and celebrate our journeys.”

The Endometriosis Network launched Endo Act, a proposed government action plan aimed at improving care for endometriosis patients Canada-wide.

“I believe Australia had a similar government action plan where the government formally apologized to the endometriosis community and started bringing more funding and research towards endo-research in Australia,” said Luciani.

“So that’s kind of the hope for the Endo Act here in Canada.”

Endometriosis Quick Facts

  • Endometriosis affects around 176 million people around the world
  • Endometriosis is thought to affect as many people around the world as diabetes
  • Approximately 30-50 per cent of people with endometriosis struggle with fertility