This text is part of the special Feminine Leadership notebook
One in ten women suffer from this disease. However, his name is very little known to the public. Do you know about endometriosis? Until recently, funding for research aimed at better understanding this affliction was scarce, in Canada and in the rest of the world. Thanks to pressure from health specialists and patients, things are starting to change.
For many people, menstruation time is an ordeal. Every month, people with endometriosis suffer, sometimes violently. This pain is caused by wandering endometrial tissue: this tissue, supposed to grow only inside the uterus, has also implanted itself elsewhere in the body. It still behaves as if it were in the right place, thickening each month to provide a potential fertilized egg with a suitable place to grow. In the uterus, if no egg implants, the endometrium detaches and comes out – this is menstruation. In the case of traveling endometrium, the detached tissue finds no way out. This is when cramps and various other health problems occur.
Until recently, you had to wait on average more than five years before being diagnosed with endometriosis. However, this disease is more common in women than diabetes. These delays are part of what is denounced by the EndoAct coalition, formed in 2020 in Canada, which brings together researchers – mainly female researchers –, doctors and patients suffering from the disease. “Many have had their symptoms dismissed by loved ones and health professionals under the pretext that they are ‘part of women’s lives,’ pushing patients into isolation and despair,” the paper wrote. Canadian Journal of Obstetrics and Gynecology members of the group at its founding.
Know and finance
Barely four years since the creation of EndoAct, gynecologist and clinician researcher at the CHU de Québec Sarah Maheux-Lacroix already sees promising changes. She enthusiastically cites the announcement of an envelope of 1.6 million dollars allocated to awareness of endometriosis and access to care for people suffering from it by the federal government in September 2023. “This are not enormous amounts compared to Canada’s GDP, nevertheless moderates the researcher, also co-founder of EndoAct. But it’s a first step. »
Since the creation of the pan-Canadian coalition, dozens of letters have also been sent to Canadian MPs and ministers to draw their attention not only to the disease itself, but also to the difficulties facing researchers working to its eradication face. “We wanted to denounce the chronic underfunding of research into endometriosis and, more broadly, health problems affecting women,” summarizes Sarah Maheux-Lacroix.
Their efforts seem to be bearing fruit: since 2023, a new funding category has been added by the federal government. “Before, I never knew where to submit my projects, because the closest category was related to the health of the mother and her child,” emphasizes the researcher. But I work with non-pregnant women, who don’t necessarily want to get pregnant. There was no place to submit projects that focused on women’s health overall. »
This new financing offer responds to one of the challenges of Sarah Maheux-Lacroix, also a professor at Laval University. “Support is offered for women’s health problems in a broad way,” rejoices the researcher. Endometriosis is even the first mentioned in the list of diseases of interest. »
Global movement
When we compare ourselves, however, we do not console ourselves. Sarah Maheux-Lacroix is sad to see that Canada is at the back of the pack in raising awareness and funding research into endometriosis. It is true that in Australia, in 2017, the Minister of Health offered a public apology for the “historical neglect” of the disease and offered an action plan to right this wrong. In France, President Emmanuel Macron announced in 2022 the establishment of a national strategy to fight endometriosis. Other countries such as the United Kingdom and Germany have similarly adjusted their approach.
“Here, it’s slowly becoming a priority,” concludes Sarah Maheux-Lacroix. For years, no attention was paid to this type of problem. It’s time to turn things around. »
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