At 27 years old, Marie-Éloïse suffers from deep endometriosis and has undergone several surgical operations. She waited seven years before the diagnosis was made. This gynecological disease affects one in ten menstruating people in France.
“Endometriosis is a fight we fight alone“, says Marie-Éloïse at the outset. At 27, she suffered from endometriosis and adenomyosis, a condition characterized by the proliferation of the endometrium inside the uterine muscle. She waited seven years before the diagnosis is made. Today, she hopes for better care for patients. In France, 2.5 million women have endometriosis, some without knowing it.
“I was in so much pain that I couldn’t get up.”
It was at the age of 20, during seasonal work, that Marie-Éloïse realized that something was wrong. “I was in so much pain I couldn’t get up“, she remembers. Endometriosis can cause very severe pain, most often in the lower abdomen. Marie-Éloïse inquires in her corner, reads a few books and realizes that she has all the signs of endometriosis. endometriosis. She consulted a first gynecologist and had a pelvic ultrasound.At that time, ultrasounds were done at the peak of pain during periods. I’ve never felt so bad in my life. I thought they were going to kill me. How can you hurt so much without dying?“, she remembers. Marie-Éloïse then has an MRI. The results are in. Marie-Éloïse has stage II endometriosis with adenomyosis.
“I was in pain three weeks out of the month.”
Marie-Éloïse had a first operation using laparoscopy, an examination carried out under general anesthesia which allows the abdominal and pelvic cavity to be explored. “At first we think that he there is hope of recovery but in fact I quickly understand that no. It will allow me to have less pain but it will not cure endometriosis.“, she explains. “I understand very quickly that the diagnostic journey is a struggle“, she said, explaining that she sometimes came across doctors who seemed not to know the disease well. “I was lucky to find a good specialist after this first operation. Being well taken care of, being understood, being heard, that too is an additional burden“, she adds.
Pain is part of my norm.
Marie-Éloïse wants to undo a preconceived idea. “Endometriosis doesn’t only hurt during your period. I had pain a week before, a week during and a week after, so three weeks a month in total. she said, admitting that she was in pain more or less throughout the day. “I’m going to be in pain depending on how I’m positioned. I can’t lie on my back with my legs outstretched for example, it’s too tight“.
“Hormonal treatments have consequences”
A homornal treatment is offered to relieve pain but it does not completely eliminate endometriosis lesions, explains Inserm. “I am on progesterone and estrogen“, explains Marie-Éloïse who wishes to warn about the consequences that hormonal treatment can have. “I gained 8 kilos in a year and lost a third of my hair. The fact that the physique changes is disturbing“, she confides. “There are also the psychological consequences of hormones. Some cause me anxiety, others not. Sometimes we wonder who we really are.”
“I had to adapt my work”
Endometriosis can have consequences on the work of those affected and require adaptations. Marie-Éloïse is studying to become a psychoanalyst and wishes to work as a freelancer. For example, she must avoid standing and moving around. “My illness clearly played a role in my career choice“, she assures. “I managed to obtain my RQTH status (recognition of the status of disabled worker) but many people with it have difficulty having it“.
Politicians have taken up this subject. In January 2022, LFI MP Clémentine Autain presented a bill aimed at recognizing endometriosis as an exempt long-term condition. This would notably allow health costs to be covered up to the maximum of the social security ceiling. The RN also made a bill in this direction, before withdrawing it on Thursday October 12.
In February 2022, the government launched a plan intended to improve the management of endometriosis by, for example, creating “regional endometriosis sectors” linked to the ARS. “Endometriosis is more than an intimate subject. It’s a political subject“, concludes Marie-Éloïse.