Pain during and in-between periods, urinary issues, intestinal issues, painful intercourse, chronic fatigue, infertility… Endometriosis is a gynecological disease affecting between two and four million women in France (one in ten), and 180 million women in the world. Many experts even consider these data are underestimated. Hard to diagnose, badly known, endometriosis might affect more women than that.
Discovered in 1860 by Karel Rokitansky, this disease is still not properly known. Questions about how it works, what causes it and especially how to cure it remain unanswered.
This gynecological disease can be highly debilitating in its most severe conditions. 21,000 endometriosis-related hospitalizations are reported every year, generating 9.5 billion euros of medical fees and productivity loss.
To boost medical research and bring answers to people suffering from endometriosis, Olivier Véran announced in March 2021, a domestic strategic mission will be launched. The report of the mission has only been handed on January 11, 2022, to the Elysée. From this document, Emmanuel Macron draws the main control measures against the disease, presented this Januayr 12 on social networks.
The French President presented three approaches to fight against the disease: investing in medical research, improving treatment of patients, and raising the awareness of the general public and health professionals about endometriosis.
When unveiling the national control strategy, Emmanuel Macron showed his ambition: "The state of knowledge on the disease is progressing little by little, in particular thanks to French specialists, but we must go faster and confirm the leading role of French research on the subject. He wishes to create a "French, even European, endometriosis cohort, which will scrutinize the frequency, factors and consequences of the disease".
Raising awareness and training caregivers to the disease is also vital, the Head of State said. "We must develop what one could call an ‘endometriosis reflex’ with all audiences: at school, at university, at home, at the office, and even, and above all, would say- I, in medical circles", he announced.
Emmanuel Macron also stated a "refresher course" was necessary in the entire country: some regions are better equipped to handle patients than others. Each region is then ask to "identify precisely the territorial channels of care, with at least one recourse and expertise center". The channel of care will be handled by local health agencies that will launch calls for projects.
What is endometriosis?
This disease is often reduced to menstrual pains. Endometriosis is the presence of endometrium-like tissues (the fabric lining the uterus) in places it should not be. More commonly, this tissue grows over ovaries, uterosacral ligaments, rectum, bladder and even vagina.
These cells cannot be naturally flushed out by the body. Therefore, they thicken, bleed, create cysts, nodules, and inflammatory reactions.
All this can lead to a lot of pain during and in-between menstruations, during intercourse, during urination and defecation. This is also the first cause of infertility in women and a pathology increasing miscarriage risk.
A poorly-known disease
It is surprising this disease is so poorly known if it affects one woman in ten in France. And yet, what causes the disease remains unknown, so are the way it works and all the impacts it leads to. It takes an average seven year to diagnose endometriosis when a woman is suffering from menstrual pain.
What makes the diagnosis so difficult is there is not one endometriosis but several. The disease can occur in different ways, affecting each woman differently. Many asymptomatic patients are unaware of their condition: sole debilitating pain pushes doctors to conduct research.
To do so, it is necessary to take an echography and/or an MRI so that the doctor can find endometrial tissue on organs outside the uterus.
Once the disease identified, very few options are available: the most severe cases use surgery to remove the excess tissue. A process to renew every time endometriosis grows back. For others, doctors are more likely to give a hormonal therapy to stop menstruations and menstrual pains.
Several associations provide support and reflection leads to women suffering from endometriosis. To make the daily life of women suffering from endometriosis easier, this January 13th, the French National Assembly unanimously passed a bill to have endometriosis acknowledged as a long-term illness.