Where is Canada’s National Action Plan to address Endometriosis?

Imagine. Doctors routinely invalidate your stabbing pain. You don't know what's happening to your own body. What is it doing? What’s going on? You cannot trust what you feel. Is it real? It’s gas, some doctors say. Could be a hernia, says another. Likely a nervous stomach, yet another doctor says. Perhaps you’re imagining it or you’re just being dramatic, some insinuate. And meds, if you get them, often don’t work.

It is one of the most painful full-body diseases, causing patients to be bedridden for days, to miss school, miss work, miss out on celebrations, miss out on life. There is little hope.

In economic terms, estimates are that it costs the healthcare system approximately $2.5 billion every year.

This is endometriosis.

No, it is not a disease of women’s reproductive systems. Historically, that’s why it has been neglected.

It is time to treat this incurable disease as if it were cancer.

We call upon the federal government to create a National Action Plan for Endometriosis to address the catastrophic gaps in the treatment and research of this debilitating disease that affects at least one in 10 women and an unknown number of Indigenous, transgender and gender-diverse people.

Canada prides itself on being a leader. But we are not in this regard.

We are failing.

Peer nations such as Australia in 2018, France in 2022 and England in 2022 have made it a priority to support education, innovation, timely diagnosis, treatment and research needs for endometriosis. When French President Emmanuel Macron announced a National Strategy Against Endometriosis, he said, “It [endometriosis] is not a women’s problem. It is society’s problem.”

Endometriosis is a painful chronic disease in which tissue similar to the lining of the uterus grows elsewhere in the body. Although endometriosis is often found in the pelvis, it can grow anywhere in the body. Endometriosis growths can cause internal scarring and organ damage. People with endometriosis suffer from severe menstrual pain, chronic pelvic pain, fatigue, bowel and bladder problems, infertility, anxiety, depression and suicidality.

The Endometriosis Network of Canada is a patient-focused charitable organization that works to promote inclusivity of all sufferers regardless of race, gender, age, ability, and in all regions of the country. If we want to solve a problem, we must ensure all voices are at the table: representatives of diverse patient communities as well as clinicians and researchers. A series of round tables must be the first step. Let’s ensure that no one is left behind.

It will come as a surprise for many to learn that, paradoxically, Canada doesn’t lack researchers and specialists in endometriosis. We have the expertise. But researchers lack support for funding. Surgeons lack support for operating time because endometriosis is not considered a high-priority.

They are stalled.

Which makes the outlook for patients even worse than it is currently.

For many, pain begins at the start of menstruation, in the early teenage years. Tragically, a study published in the Journal of Obstetrics and Gynecology Canada found that the average patient is approximately 28 years old by the time the disease is properly diagnosed. Estimates are that it takes five to twenty years for diagnosis. Shockingly, a French study – there is no equivalent data in Canada – found that 25% of general practitioners in that country were unable to identify endometriosis in patients who suffered from the disease, clearly pointing to the need for education.

Once the disease is diagnosed, Canadians wait nine months to a year for specialized surgical and chronic pain care, a timeframe that has been prolonged due to the pandemic. There are vast discrepancies in the distribution of endometriosis expertise across Canada. Many people with endometriosis travel to different provinces to seek help. In another tragic example of inequality, research shows that Black women’s pain is normalized more often than for their white counterparts.

This is not the Canada we aspire to be. It is not the Canada we claim to be.

Desperate for relief, hundreds of people living with endometriosis leave the country to seek help elsewhere. Every year, nearly 100 Canadians travel to Romania for endometriosis surgery.

Canada must step up. The federal government has an opportunity to convene partners to ensure a coordinated, layered and holistic action plan. Here’s what we think needs to be done. Some of the objectives could be to develop cultural competence to interact effectively with the diverse patient population, gather data on the disease’s prevalence, fund research and innovation, guarantee timely diagnosis and access to quality care and raise awareness of the disease.

Frequently for people living with endometriosis, their pain is marginalized. It is often normalized as well. There’s a need for hope. There’s a need for understanding - and action.

This pain is not normal. This is endometriosis, and it is a crisis.

Katie Luciani, Executive Director of The Endometriosis Network of Canada