EndoAct Canada promotes awareness and treatment of endometriosis

French President Emmanuel Macron made endometriosis a legally recognized chronic condition in January, boosting services for millions of women living with this painful and debilitating condition. Today, a group of physicians and patients representing approximately one million women with the disease in Canada are calling for the same recognition and help.

“People with endometriosis have waited their entire lives to hear leaders recognize endo as a truly significant chronic health issue,” EndoAct Canada Executive Director Kate Wahl told CTV News from Toronto. “It only reinforces that this is a serious issue that deserves national leadership and attention.”

Endometriosis is an often painful disease that can lead to infertility. It occurs when growths grow inside the abdomen, often around the ovaries, fallopian tubes, and tissues that line the pelvis.

Launched shortly after Macron’s announcement, EndoAct is a national campaign that highlights how the disease affects one in 10 women and costs Canada an estimated $1.8 billion a year.

Endometriosis patient Feyisara Edu says she supports the campaign and has written to her federal representative about it. Edu suffers from searing abdominal spasms, so debilitating that she has required emergency care on several occasions during the COVID-19 pandemic.

“I was in so much pain, I was hospitalized for about three to four weeks,” the 36-year-old told CTV News from Tillsonburg, Ont. “So definitely I couldn’t work. I could not do anything. Almost every two weeks I miss work because of this pain.

Edu says she has been waiting two years for surgery to remove the growths, which would ease her excruciating pain and allow her to finally start fertility treatments. Edu and her husband hope to have a child.

“I basically just use painkillers just to manage it until I get surgery,” Edu said.

There were already long waits for diagnosis and surgery before the COVID-19 pandemic, which certainly made matters worse.

Dr. Sukhbir Sony Singh, a gynecologist at The Ottawa Hospital, says that in severe cases, long waits for treatment can lead to bowel obstruction, lung obstruction and even organ damage when lesions of the abdomen dilate.

“We’re seeing kidneys that have, what we call, gone through a silent death,” Singh added. “So the kidney slowly ends up being blocked and dying by the time you see them.”

American comedian Amy Schumer went public with her endometriosis surgery last September, which resulted in the removal of her uterus, appendix and 30 lesions.

“All my lifelong pain explained and removed from my body,” she said in an Instagram post.

Doctors suspect that there are countless women in Canada who cannot get similar relief with timely diagnosis and treatment.

“I fear that if we don’t recognize the true extent of this disease, more and more patients will suffer from it,” said Singh, who also holds the E. Jolly Research Chair in Gynecologic Surgery at the Institute. Ottawa Hospital Research Center.

Supporters say there are some small signs of progress. In March, Ontario will become the first province to hold Endometriosis Awareness Month after a private member’s bill calls for attention to the disease. But doctors say more specialist diagnostic and treatment centers are needed, like those planned in Australia and being considered in France.

“If France can do it, in the middle of the pandemic, it doesn’t make sense that we can’t,” Singh said.

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