Published 03/28/2024|Modified 10/18/2023
Endometriosis affects between 10 and 20% of women in France. However, this disease remains poorly understood, which delays its diagnosis and complicates its treatment. Fanny Robin, author of “Roommates with endometriosis” and the comic strip “Just an endometriosis”, discusses the social issues of this disease.
What is endometriosis?
Endometriosis is a gynecological disease which manifests itself intensely during menstruation: the uterine tissues stick like tar to several organs. We then speak of “adhesions” which cause micro-bleeding.
The Inserm definition seems to me to be the fairest in this sense. However, many imprecise definitions of this disease circulate.
There is a big question mark over the actual causes of endometriosis. However, as long as we do not have a precise definition, we will not be able to make research effective nor completely reliable diagnoses for this pathology.
INSERM (National Institute of Health and Medical Research) gives the following definition: endometriosis is a disease characterized by the abnormal presence, outside the uterine cavity, of fragments of tissue similar to that of the mucous membrane of the the uterus. These fragments will implant and proliferate on numerous organs under the effect of hormonal stimulation. The main symptoms are pain (especially pelvic pain, especially during periods) and, in some cases, infertility.
What are the symptoms ?
Endometriosis is characterized by heavy and very painful periods. The pain is persistent at the pelvic and abdominal levels, but can spread to the shoulders. Other pain may occur during sexual intercourse or urination (urine and stool).
The complexity of endometriosis is that the symptoms vary from one woman to another. There is no correlation between the symptoms and the extent of the disease: you can have very advanced and not very painful endometriosis, and conversely have very strong pain for local endometriosis, which is not very invasive and whose “adhesions” are poorly developed.
Is this disease correctly diagnosed?
It is partly visible with a pelvic ultrasound, but it is often recommended to do an additional MRI. It is then necessary to favor a radiologist specializing in gynecology, who will be able to detect it more easily. Today, endometriosis, like adenomyosis (endometriosis internal to the uterus), is recognized as a real pathology.
I myself have often been told that I was probably “too stressed”: I was diagnosed with the disease only twelve years ago, although I have been suffering for twenty years. Normalizing period pain therefore reduces the possibility of early diagnosis. However, no longer being able to walk, or even get out of bed, is not “normal”: these are warning signals.
What are the consequences of this disease on daily life?
Endometriosis has serious consequences on emotional and social life. The pain they cause can have a big impact on sexuality. Endometriosis even arouses a feeling of shame, because of prejudices that stigmatize women as “frigid”, even though the pain linked to endometriosis is real and physical.
And at the professional level?
The repetition of “endometriosis attacks”, very intense and sudden, forces many women to work part-time, or even to abandon the idea of working.
Finally, the lack of treatment for the disease aggravates situations of financial insecurity. The lack of specialists, the absence of centers dedicated to endometriosis and pain centers (particularly in medical deserts), force affected women to turn to complementary medicine (osteopathy, physiotherapy, acupuncture, psychologist), which is very expensive. , which remain for the most part the responsibility of the patients.
You are the author of several works in which you share your experience of illness. What is the meaning of your commitment?
As with many chronic diseases, endometriosis is progressive. It can be part of an individual’s story. Putting endometriosis in the narrative was a way for me to move forward and talk regarding my illness without taboo. My comic strip (Just an endometriosis) aimed to tell the “adventures” that this disease involves and regarding which we can smile in retrospect.
But my commitment is also social and political. When I created my Instagram account, I wanted to raise awareness less regarding the biological reality of endometriosis than regarding its social consequences. Because it is a chronic illness which is not sufficiently taken into account in the professional context and on a medico-social level.
Endometriosis is considered a long-term condition
“off the list” (ALD31). It is therefore not strictly recognized as a long-term condition, which would facilitate its management. We should be able to move forward much more quickly on this subject.
Know everything regarding endometriosis
Long ignored, sometimes very difficult to live with on a daily basis, endometriosis is defined as the presence outside the uterine cavity of tissue similar to the uterine mucosa which will be influenced, with each menstrual cycle, by hormonal changes.
