Endometriosis Awareness: A Canadian Perspective
March is Endometriosis Awareness Month.
Why does a disease need such a focus? Why bring attention to something that is benign and limited to only half of the population? Is it really that bad? Many have never even heard of the condition and most can’t even pronounce “Endo-metri-osis”!
If you’re reading this, you probably already know why it is so important that we do raise awareness and advocate for this common condition. For too long, in Canada, we’ve remained on the sidelines about this complex condition that can lead to a significant impact on the quality of life of women* across our country. In addition, the health care system is likely footing the bill for the delay in diagnosis (up to 7 years in international studies) and inadequate treatment options due to a lack of provider knowledge.
What is Endometriosis?
Endometriosis is a benign but complex condition that is defined as “endometrium-like” (similar but not the same as the lining of the uterus) tissue that is found growing outside the uterus. It can be found almost anywhere in the body but most often on the pelvic organs (ex. Ovaries, bowel/bladder surface, fallopian tubes). There are several forms (superficial, deep or cysts of the ovaries) but the symptoms vary tremendously (no symptoms to severe and debilitating pain) and this makes diagnosis tough.
What can happen?
The main symptoms of endometriosis are pelvic pain and infertility (not being able to have a baby). The pain can be extremely severe in many women and may result in missed time off school, work and family experiences. Pain most commonly presents as painful periods, sex, voiding and/or bowel movements. If left untreated, the pain becomes “chronic” which means it may occur daily and worse with the period. Personal relationships, finances and self-confidence are often strained. In women who wish to conceive but cannot due to endometriosis, the stress is extreme as many lose hope as they look for answers.
Is it common?
Our available statistics on this disease are limited and the reporting is variable due to provider bias, health care system constraints (private vs public systems) and lack of reliable diagnosis techniques. Right now, many use 1 in 10 as the number of women with endometriosis. However, women with pelvic pain and infertility have a higher chance of endometriosis being diagnosed (up to half) and it is often seen in women without symptoms during other unrelated surgeries. This writer believes that the true prevalence of this condition is much higher than 1 in 10 and that with better diagnostic techniques we will see this over time.
How do you diagnose endometriosis?
The diagnosis is often said to be best by surgical visualization and excision (cutting it out and viewing it under a microscope). However, if surgery is done by those without the knowledge of the appearance of the disease it may go undiagnosed or called “infection” or “inflammation”. There are many groups world-wide looking for a non-surgical diagnosis (ex. blood markers), but this still isn’t available. Advanced imaging (ultrasound and MRI) can help but only in cases of large cysts or deep endometriosis (nodules that invade tissue like the bowel or bladder).
Back to the original questions:
Why does a disease need such a focus?
Because many women are suffering across the country with pain and infertility and many have endometriosis. Providers, the public and health care leaders need to learn more about this condition to help address the years of suffering many have gone through (or continue to go through).
Why bring attention to something that is benign and limited to only half of the population?
Society still is uncomfortable talking about periods, sex and pain. Openly discussing painful menstruation isn’t “dinner-time” discussion in most households growing up. As a result, most of the patients I see have suffered for years and often since they started their periods. A lack of early recognition and treatment results in years of neglect and significant impact on many young women. I don’t want my daughter to grow up in a world where she cannot ask for help.
Is it really that bad?
The impact for some includes suffering in pain for years, visits to multiple care providers and emergency rooms and potentially multiple surgeries. Many are told they are crazy without any further assistance. So yes, it is bad.
Some of the more complex disease forms can also lead to permeant organ damage like losing a kidney, bowel blockages, lung collapse and permanent infertility. The “deep” form often requires several different surgical teams and surgery can last for hours. Unfortunately, in Canada, we have very few sub-specialists and centres that can handle the deep complex forms leaving many (especially in rural areas) without access.
In summary, Endometriosis is common and I want everyone to know as much about this disease as they do about other chronic and severe conditions. The disease is real, it has a huge impact on those suffering and the health care system that is often unable to respond due to lack of knowledge and resources.
Please do your part and share the message, donate to advocacy groups like The Endometriosis Network or your local hospital that specializes in complex gynecologic care.
Dr. Sukhbir (Sony) Singh MD, FRCSC, FACOG
Associate Professor, University of Ottawa
Vice-Chair Gynecology, The Ottawa Hospital
*”Women” has been used in this article as a reference to “females”. Endometriosis may affect any biologic female irrespective of gender expression.
About Dr. Singh: Dr. S. Singh is a gynecologic surgeon who completed additional fellowship training in minimally invasive surgery in Canada and Australia. His main clinical focus is surgical management of endometriosis and fibroids. He is also the lead for the Ottawa MIG Research Group which has several surgical and medical trials for these conditions. The Research Group has funding from several non-industry and industry partners including Abbvie, Bayer and Allergan.