The invisible disease affecting half a million Canadian women

Over 500,000 Canadian women are affected by endometriosis with the average age of diagnoses just 27 years old. What’s happening?

Earlier in 2020, a research and development based biopharmaceutical company, AbbVie, sponsored a first of it’s kind only survey of 30,000 women in Canada aged 18-49. There results have been published in the Journal of Obstetrics and Gynaecology Canada. One of the key findings for Canada is that women with endometriosis often experience a delay of five years in being diagnosed. This half decade delay in disease recognition indicates an important unmet need for more timely diagnosis of endometriosis across Canada.

It is estimated that 7% of Canadian women will develop endometriosis. So what is this almost invisible disease? Endometriosis (en-doe-me-tree-O-sis)  is a painful disease in which tissue similar to the tissue that normally lines the inside of the uterus — the endometrium — grows outside of the uterus. Endometriosis most commonly involves the ovaries, fallopian tubes and the tissue lining the pelvis. Rarely, endometrial tissue may spread beyond pelvic organs. It is estimated that globally, over 176 Million women suffer from this disease. This disorder can also have an impact on fertility.  There are treatments, but currently there is no cure.

“The road for an endometriosis patient is long, with various treatments and no cure. I deal with the physical aspect as well as the emotional and mental pull of it all,” said Alexandra Camara, a Canadian living with endometriosis. “I became symptomatic at an early age. My symptoms increased and became more relevant when I was 14, and at 19, I was formally diagnosed. Receiving a proper diagnosis, then later excision surgery, was monumental to symptom management. To help raise awareness, I’m sharing my story to empower women not to suffer in silence.”

In some cases, Endometriosis can lead to a cancer known as adenocarcinoma for women later in life who have the disease as well as ovarian cancer.. This is yet another reason that early diagnosis is critical. 

“Often misdiagnosed and mismanaged; endometriosis can have a significant negative impact on a person’s physical and mental health and dramatically hinder their overall quality of life. Women need to know that painful periods are not normal. There are treatment options available, as long as endometriosis is identified quickly. Unfortunately, that is not always the case,” says Dr. Sukhbir Singh, MD, Professor, Department of Obstetrics and Gynecology, University of Ottawa, Ottawa, ON, who is a primary investigator in the study.

Resources such as the Endometriosis Network Canada and online chats via #EndoEmpowered  can provide important information and foster a sense of community for endometriosis patients in Canada.

If you’re experiencing any of these symptoms and haven’t been tested, it may be worth discussing with your doctor on your next visit.

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Author: Alexa Hurst is a staff writer for HUM@Nmedia, the parent brand of Optimyz and Silver Magazines and is based in Halifax, Nova Scotia.