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.
To boost medical research and bring answers to people suffering from endometriosis, Olivier Véran announced in March a domestic strategic mission will be launched. The latter will be detailed in April, as reported by our peers from Ouest-France.
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.
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. The government hopes the mission carried out by European deputy and gynecology doctor Chrysoula Zacharopoulou will soon provide an action plan against the disease.
The Health Minister says this strategy will revolve around “five major topics in order to get to grips with the fight against this disease in the most complete way possible, working in improving its detection, patients’ care pathways, and treatments by reinforcing medical research and communication to make this disease known”.