“it was a relief to put a word on my ailments”

One in ten menstruating people would be affected by endometriosis in France. This complex disease generates chronic illnesses and no specific treatment has yet been found. On average, it takes seven years to diagnose it. For women’s tops, Justine and Perrine have agreed to talk about their careers.

“It’s normal to have pain when you’re on your period.“This sentence, uttered by a health professional or his entourage, most people with endometriosis have heard it at least once in their lives. This refusal to recognize women’s pain very often results in a delay According to INSERM, it takes an average of seven years to diagnose endometriosis, yet it is estimated that at least one in ten menstruating people suffer from it in France.

This disease is characterized, to simplify, by a spread of endometrial cells outside the uterine cavity – the uterus being lined with endometrium which disintegrates during menstruation. These cells will implant and proliferate, depending on subsequent hormonal stimulation, on neighboring organs. In 70% of cases, this causes disabling chronic pain.

Justine Lenclud experienced pelvic pain very early on. “My story with endometriosis started when I got my first period, when I was 11 years old. They were immediately very hemorrhagic and painful“, she explains. She was placed on birth control pills from the age of 14 “because it was supposedly the only solution to alleviate the pain“. A pill that she had to change regularly”because over time, our body gets used to taking the drug and, at some point, it no longer has an effect“, exposes the young woman.

The first time Justine heard about endometriosis, she was 27 years old. Thus begins a long medical journey. “We start with an ultrasound, then we do the MRI exam. We realize that the examination is not done by a person who really knows endometriosis so we have to start over. You have to go all over France to get the diagnosis, meet the right people“, she enumerates.

One day, Justine comes across a television report on endometriosis with Laëtitia Milot, a French actress very committed to the fight against this disease from which she suffers and godmother of the EndoFrance association. A specialist, who practices in a clinic in Bordeaux, intervenes in the program. “I recognized myself so much in the way the pathology was explained that I decided to go and meet her“, explains Justine.

With her medical file under her arm, Justine meets the specialist and is officially diagnosed in July 2018. “It was a relief to put a word on my ailments. It was really the first time that I was told: ‘in view of the symptoms, it’s obvious that it’s that, it’s not otherwise’.”

His experience is taken seriously. His imaging results are reviewed by the Bordeaux medical team, a new MRI is then performed to confirm the diagnosis and detect the location of the lesions.

After years of medical wandering, Justine has learned to live with this complex disease whose symptoms and consequences vary depending on the patient. “We always say, there is not one but many endometriosis. The damage and lesions are different from one woman to another.”

Endometriosis can be superficial, ovarian or deep. It can affect the uterosacral ligaments, the intestine, the bladder… The symptoms can be painful periods, heavy bleeding, pelvic and lumbar pain, during sexual intercourse, digestive and urinary disorders, chronic fatigue or even infertility. . Also note that the extent of endometriosis is not necessarily proportional to its pain.

“Depending on the stages of gravity, some women are unfortunately no longer able to get up every day and go to work. Me, I’m lucky to be able to do it“, supports Justine. She therefore joined the Picardy branch of EndoFrance in order to raise awareness of this pathology and to support patients.

“For me, commitment is very important, because I am one of the women who experienced the diagnosis very well… it seemed obvious to me to carry the voice of women. […] This disease is very disabling and not well known to the general public. We talk about it more and more today but unfortunately, it is still insufficient“, she underlines.

Perrine Dardart suffers from endometriosis and is a member of EndoFrance. She met Justine in 2022 during a discussion group organized in Laon, in Aisne, not far from her home. A decisive encounter in his journey with the disease. “Justine is very good advice. She directed me to specialists in Amiens because I was poorly followed in Paris. Now I have treatment and I’m living well with my endometriosis, let’s say. My endometriosis is like a roommate with whom you have to live, with whom you have to eat, take all the walks…“explains Perrine.

Perrine, too, had a very long nine-year medical journey before she was diagnosed with endometriosis in 2018.”I got married in 2007 hoping to have a family with my husband. In 2009, I called several gynecologists in the region and I have no children because I was misdiagnosed. We passed by. I came across rather grossophobic doctors. I was told that it was because of my overweight that I had infertility problems and bleeding periods. They didn’t listen to me, I wasn’t understood“, she testifies.

Yet, at that time, Perrine suffered from intense pain”to die for. It was terrible. They were spasms as if knives were sinking into my stomach. And then hemorrhagic rules like crime scenes, I was tracked. It was really awful“.

When Perrine meets Justine, she is on her 73rd day of bleeding. For her, “it is above all necessary that the practitioners really listen to their patients, that they have the training and the information to give. It’s really important“, emphasizes Perrine. This is one of the objectives pursued by the EndoFrance association.

At the moment, there is a lot of intervention in the schools that train future health professionals. We also raise awareness for professionals in place who wish to be made aware of the pathology.

Justine Lenclud, volunteer at EndoFrance Picardie

The association is of course present for patients and relatives and acts as a link between them and health professionals. “All the women I have met in over four years of volunteering affect me. For me, it’s always a lot of emotion to listen to their journey“, abounds Justine. Discussion groups are thus organized every month, face-to-face and remotely.

To date, there is no definitive treatment for endometriosis. Once the diagnosis has been made, different treatments can be offered depending on the case and stem the progression of the disease. It can be a hormone treatment, an artificial menopause cure or a surgical treatment. Endometriosis is a progressive disease, it can regress, worsen or recur.

In more and more cases, endometriosis is the subject of multidisciplinary care. Consulting a physiotherapist, a dietician or a psychologist can help relieve symptoms or cope with the disease. Practicing a sport like yoga can also help some women.

EndoFrance Picardie can be reached at the email address [email protected]. Many resources and information are also available on the EndoFrance.org website.

Find the entire program Tops feminine on endometriosis, and the other episodes of the show on france.tv.