Endometriosis affects 10% of menstruating women and trans and non-binary people who are of childbearing age. The diagnostic delay is, on average, in Canada, five years, but can go up to 20 years, according to the organization Endometriosis Quebec.
The years of medical wandering before the diagnosis, the waiting time to see the specialists, but also the lack of medical specialists in Northern Ontario, delays the diagnosis often leaves women on their own, and without any real support.
Maimouna Sangaré, a 41-year-old Sudbury resident, has a severe form of the disease.
She took 20 years to get a final diagnosis. Since her first period, she has suffered crippling pain, to the point of not being able to move from her bed for days, she says.
A few years ago, Ms Sangaré had to have surgery in France.
« Cells from my uterus migrated to the lung, the surgeon removed part of my lung. »
It was only following her second visit to the emergency room that she was able to get an appointment with a gynecologist.
The specialist she hopes to see is in Toronto, and the waiting list for a consultation is regarding 1 year.
It also points to the lack of communication, information and awareness on the part of health professionals, but also of society in general.
« Everything related to femininity is still taboo, we normalize the pain during menstruation and we hide the other signs of the disease. »
Same observation with Natacha Pilon, this 31-year-old teacher who lives in North Bay.
After years of suffering, disabling pain and a range of tests, the diagnosis falls following 16 years.
« The predominant symptom for me is nausea and gastric problems on a daily basis, not to mention the debilitating pain during my period which forces me to stay in bed, the more time goes by the more the pain becomes intense even outside of menstruation. »
She hopes to see a disease specialist in Toronto in the coming months. She also confides that the waiting lists for surgery are 2 years on average.
Lifting the veil on endometriosis to better understand it
Talking regarding it is the first step in diagnosing endometriosis, according to Dr. Sarah Maheux-Lacroix, gynecologist, clinician-researcher and assistant professor at Laval University.
The first symptoms that should alert are disabling pain during menstruation. There is also pelvic pain and during intercourse.
In a majority of cases, infertility problems can arise.
The further the disease progresses, the more other organs are affected.
« It is a disease in which internal tissues of the endometrium which is at the level of the uterus form outside the uterus and come to settle on other organs. »
Most often, these endometrial tissues settle on the bladder, intestines, colon, kidneys and rectum.
In very rare cases on the diaphragm and in the lungs. And it is the inflammation of all these organs that creates the pain.
Why such long diagnostic times?
According to Dr. Sarah Maheux-Lacroix, in addition to the normalization of pain during menstruation, the lack of knowledge of the disease even in a medical setting can also contribute to the delay in diagnosis.
She adds that unfortunately conventional ultrasounds cannot diagnose endometriosis.
The techniques that exist to ensure the diagnosis, such as magnetic imaging and specialized endometriosis ultrasound, are only available in very few specialized centres.
As for surgery, it remains a last resort, because it is a very invasive intervention for the body, and not without consequence.
A matter of public health
March has been declared in 2021 as Endometriosis Awareness Month in Ontario.
This disease can cause a loss of 10 hours of productivity per week in the workplace.
The Society of Obstetricians and Gynecologists of Canada estimates that endometriosis costs the Canadian economy $1.8 billion annually.
Endometriosis is as prevalent as diabetes, but hasn’t had the same attention
said Dr. Sarah Maheux-Lacroix.
The researcher hopes that in the coming years we will be able to talk regarding it more and raise awareness among populations, but also political systems in order to encourage them to release more funds and improve research on endometriosis.
