“Now the patients hear about the disease, self-diagnose themselves and come to ask us to confirm the symptoms,” says the specialist.
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“There is not enough research to find the cause and since we don’t have the cause, we don’t have a cure for the cause and we are just trying to control the disease”, lamented Wednesday January 12 on franceinfo the doctor Émilie Faller, obstetrician gynecologist, specialist in endometriosis at the EndoAlsace hospital center in Strasbourg. She declares herself “very happy” of the announcement ofan endometriosis plan made the day before by Emmanuel Macron. This plan aims to improve patient care “in each region” and to fight against this disease “unknown to the general public” while it affects one in 10 women. “It’s only been a few years since you may think that having your period shouldn’t hurt, and yet there is still a lot of taboo around period pain.”, she explained.
franceinfo: 10% of women are affected and it takes an average of 7 years between the onset of symptoms and the diagnosis. Why is it so long?
Emilie Faller: Because it is a disease unknown to the general public, to the patients themselves.
“Period pain is often trivialized. It’s only been a few years that you think having your period shouldn’t hurt, and yet there is still a lot of taboo around period pain.”
Émilie Faller, obstetrician gynecologistto franceinfo
We don’t dare talk about it and the doctors until now had not had much training. It’s only been two years since all doctors in their second cycle have had a course on endometriosis. It’s an invisible disease, that’s the problem with this disease so we are very happy that this fight plan is resumed and that we can organize patient care in each region.
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What are the symptoms that should alert?
The first symptoms are dysmenorrhea, period pain which is very intense, sometimes likened to the pain of a fracture. These are women who during their period cannot get up, have to take medication for very severe pain, cannot go to work, or even teenage girls who, in college, are forced to go to the infirmary .
Do you have the impression that there is a societal evolution? That more women come to see you?
Yes, now patients hear about the disease, sometimes self-diagnose, they come up with their symptoms and ask us to confirm them. It is not always easy to make a diagnosis, especially when the forms are not yet too advanced, but talking about it increases the possibility of being able to make a diagnosis. Fortunately, it is not always that way, but it is very common, we find a lot of it and earlier and earlier so we can potentially better control the disease.
What can be done once the diagnosis is made?
The problem is, we don’t know what causes endometriosis. One of the hypotheses is that menstrual blood flows back through the tubes during menstruation, and will get caught in the belly and disease develops. But it’s much more complex than that. We know that there are genetic, immunological and environmental factors. There are several genes but not enough research to find the cause and since we do not have the cause, we have no treatment for the cause and we are only trying to control the disease either with hormonal treatments to avoid having periods, and to relieve the patients, either by surgery which can be very heavy when the disease is advanced.