On March 8, two doctors specializing in the management of endometriosis, Marie Ceccarelli and Elodie Hénot, decided to launch
Easy endo, a free site to help women who suffer from this chronic disease on a daily basis, which manifests itself in the presence of uterine tissue outside the uterus. The platform obtained a “digital prototype” grant from the Nouvelle-Aquitaine region, which supports the action of the Bordeaux start-up in favor of health accessible to all. Doctor Marie Ceccarelli has agreed to answer questions from 20 minutes.
How did the idea for Easy endo come about?
With Elodie Hénot, we see a lot of patients, and we thought about a solution to meet the requests that we could not honor, noting that there can be up to a year of waiting in specialized centers. in endometriosis. The women arrived after a fairly chaotic treatment course, after seven or even ten years of medical wandering where they were taken for a walk without finding the diagnosis that could explain their pain. What also caught my attention was to see women coming from very, very far away who took planes or trains. We said to ourselves that we had to be able to give them access to information from specialists near their homes and facilitate their care so that they could have appropriate follow-up, as quickly as possible.
What are the main obstacles to appropriate care?
If in her family there are a lot of women who have endometriosis and who don’t know it, a woman can hear: “It’s normal, you get that from your mother or your grandmother, we are like that in the family ”and this is a first obstacle. And there are also still gynecologists who say that it is normal to have pain during your period… There is a recent project by the Ministry of Health to develop endometriosis networks in each region. Two years ago when we started to think about Easy endo, there was nothing. If the patient already has an idea of what she is suffering from, she will go to see specialists and not go through I do not know how many general practitioners or gynecologists who do not know the disease. You have to know what exams to do and consult specifically trained radiologists to save time. It’s a period-related disease so if you stop it, you take away a lot of the symptoms and prevent the disease from progressing.
What forms can the disease take?
We see all the possible forms: superficial or invasive lesions throughout the pelvis or even at a distance. What makes the disease often misunderstood is that there is no correlation between the intensity of the symptoms and the severity of the lesions. We can have women with very minimal lesions who are still invalidated and conversely, more serious lesions in women who have no symptoms. It’s quite complex, you really have to know the disease.
How does the Easy-Endo site help women manage pain?
We really need multidisciplinary care. Stopping cycles is not always enough to stop the pain because there are also digestive and urinary disorders associated. We work in a network with physiotherapists, osteopaths, pain doctors, sophrologists, sexologists etc. There is also a need to take care of your diet so we work with specialized nutritionists. The goal of Easy endo is to give advice on healthy living and to point out adjoining complementary therapies to combine. It also offers a personalized agenda that allows you to note your symptoms on a daily basis and export a summary in the form of a graph for the doctor who can see at a glance what has happened between two consultations. We also offer lives each month with one or two experts and anonymous questions are collected via a chat.
Can we cure endometriosis?
No, in the sense that the lesions remain in their place, but we can ensure that the disease is stabilized and the symptoms go away. Most of my patients are between 20 and 35 years old and the heaviest cases are those where the disease is not discovered until 35 years old, in which case the repercussions are greater. It calms down at menopause, because the endometrium is then dried up. For those who have had a very severe form, they can nevertheless retain some symptoms related to adhesions or certain digestive disorders.