Chloe remembers having her first period when she entered sixth grade. But from her first periods of menstruation, she realized that something was wrong. Pains, hot flushes, malaise… She begins to miss classes and goes back and forth to the infirmary. Chloé doesn’t know it yet, but like one in ten women, she suffers from endometriosis. A term that has been democratized for a few years but whose diagnosis is incredibly slow.
“At the time, we didn’t talk about endometriosis, remembers the student, blood was taboo, we were ashamed to say that we had our periods. “At the time, the schoolgirl will then take on it. A reaction that is observed in many patients. And for good reason, having pain during your period has always been trivialized.
Suffer and shut up
After several years of pain, Chloé begins to get information by looking on the internet. Because in his entourage, his symptoms are considered normal. “Everything was blamed on my thinness and stress. I wasn’t taken seriously, even I didn’t take myself seriously. They said that I was ‘doudouille’. Reproaches that Éléa, 23, also had to face. She too experiences vomiting, cramps and pain, even spending most of her period in bed. Although she had internalized her symptoms for a long time, Éléa ended up talking to her doctor about them. “He first put it down to stress and prescribed me paracetamol and antispasmodics, in vain”, says the young woman, “appointments with gynecologists followed, questioning my statements. That’s when I was told that I had to take it upon myself, that it was normal to suffer and that you shouldn’t be a sissy. »
Meetings that sow doubt in the minds of young women questioning their intimate conviction.
“Even my own mother said that I had nothing”
In high school, when she still hasn’t been diagnosed, Chloé meets Julie. “It was Chloé who helped me to continue, she encouraged me to continue the process by telling me that I was not inventing my symptoms”, confides Julie, “because by dint of hearing that I was doing too much , I doubted my own symptoms. I was constantly torn between my desire to continue my research and my fear of having nothing in reality. I sometimes wondered if I wasn’t creating symptoms for myself, if they weren’t just in my head. »
“I owe nothing to the doctors”
Perseverance that will bear fruit. Over the years, the subject of painful periods begins to be mentioned. The term endometriosis is heard, not in the mouths of doctors but on social networks, in circles of friends and on the internet. And Éléa, Julie and Chloé end up making their own diagnosis.
“It was myself who found my disease, by going on the internet and talking with others, I self-diagnosed”, admits Chloé. “At 19, I wanted to be sure and went to a specialized center in Paris. I needed that confirmed. Today, I owe nothing to the doctors. »
Almost ten years after her first period, the diagnosis falls for the student. Chloe is beautiful and well suffering from endometriosis. Éléa, she learns of her illness after three years of suffering. For Julie, the diagnosis is a coincidence: “I learned that I was ill very recently, last September, and following a miscarriage for which I went to see without knowing it, a new specialist gynecologist in endometriosis. So I was 23 years old, and the subject of my appointment had nothing to do with endometriosis. »
The announcement of the diagnosis
“If I hadn’t made an appointment with this gynecologist by chance, I would surely have given up my research, and I would have remained ill without knowing it, without ever understanding my symptoms, so much did the medical profession manage my case”, laments the young woman. When the term endometriosis is finally associated with her discomfort, Julie is overcome with a feeling of relief. An emotion shared by Éléa. After her mother’s insistence on getting an ultrasound, the diagnosis is finally made. She remembers, strangely, having smiled: “a weight was lifted from my shoulders and it was not fear that came over me. Especially since we naively think that, if naming is recognizing, solutions will be found, and our word will no longer be questioned… We realize later that it’s not so easy with endometriosis . »
Mourning a life without disease
In view of the extreme slowness of her diagnosis, Chloé did not feel relieved when she heard the news. “I still suffer from the slowness of this diagnosis, because I knew it. There were very cold doctors. One of them said the word endometriosis in front of me and then it was ‘basta, you’re going home’. I had to wait a year for someone to draw me a picture of my uterus and explain to me concretely what was wrong with me. We are not liberated and we never will be. So yes, I suffered from this slowness and I still suffer from it. »
Because if the term endometriosis allows women to put a word on pain, it also sweeps away the other possibilities and many scenarios imagined for years. Chloe had to give up on the idea of maybe having ovarian cysts. A solution that would have allowed the student to be operated on and no longer suffer. “It’s strange to say, but after the diagnosis, you have to be able to mourn a life without disease”, says Éléa with several years of hindsight.
“A lot of people, despite my diagnosis, still think I’m abusing”
During their testimony, Julie, Chloé and Éléa all three pointed out something alarming. Each of them considers themselves “lucky” to have finally received a diagnosis, but also to “not be the most to be pitied”. Certainly marked by a discourse that has been addressed to adolescent girls for too long, they are still evolving in a society where endometriosis is not considered a long-term condition (ALD). “Men and women also need to be aware. Ads are needed, and not just on International Women’s Day. No, you don’t die of endometriosis, but it’s disabling and it should be recognized as such,” concludes Chloé.
Today, Éléa cannot take time off when the pain is too strong. Julie still has to justify herself to her relatives and Chloé pays 40 euros for her box of contraceptive pills. On March 25, 2023, the day of the EndoMarch, a global march for endometriosis, there are 190 million.