Endometriosis: why one in two French people believe they are not sufficiently informed about this disease ?

On en parlait encore peu il y a dix ans. Pourtant, l'endométriose est une maladie gynécologique chronique qui touche une personne menstruée sur dix en France. Charday Penn/Getty Images

In the space of a few years, endometriosis has become an increasingly publicized disease. However, the French still have gaps regarding this pathology, in particular men, seniors and more generally those who do not know people suffering from this disease. This is what a study reveals. OpinionWay survey published ahead of World Endometriosis Day which takes place on March 28.

There was still little talk about it ten years ago. However, endometriosis is a chronic gynecological disease which affects one in ten menstruating people in France. It results in the presence of fragments from the endometrium (mucosal wall which covers the uterus) in the reproductive or digestive organs, causing inflammatory pain, most often during menstruation.

There are three forms of endometriosis (superficial, ovarian and deep pelvic) which vary depending on the organs affected and the degree of severity of the lesions. In 30% to 40% of patients, this disease can represent a cause of infertility.

Although it was discovered in the 1850s, this pathology, which can be very disabling on a daily basis, has long remained in the shadows. Even today, the average duration of medical wandering (i.e. the time between the appearance of the first symptoms and diagnosis) is seven years in France. No wonder, knowing this, that the French are still poorly informed on the subject. An OpinionWay survey published this Monday, March 25 reveals that one in two French people (51%) believe they lack information on endometriosis (including 61% of men).

This lack of knowledge manifests itself mainly in the consequences of this disease, even if 88% of French people say they are aware that endometriosis can lead to infertility and that it has an impact on sexuality. Furthermore, 76% know that you can suffer from it all your life‧ "But the other manifestations of endometriosis remain little known", underlines the survey. For example, more than half of French people (57%) are unaware that there are several forms of endometriosis. 

No definitive treatments

As the EndoFrance association points out on its website, "there are no definitive treatments for the disease today. ;rsquo;endometriosis, even if hormonal therapy and/or surgery can stem the progression of this disease for several years depending on the case". The respondents also seem to be aware of the existence of these treatments, since hormonal treatment and surgery are the two main treatments cited. Cryoablation (a technique consisting of shrinking tumors by cooling) comes in third place.

"The French could be more informed about endometriosis, a majority being today poorly informed about this disease"< /em>, conclude the authors of the survey, with an emphasis on men, seniors or even those who are not affected personally or through their entourage. Only 20% of participants in this survey say they are affected by endometriosis. Among them, 4% say they suffer from the disease themselves and 16% explain that they have affected relatives.