TESTIMONIALS. Endometriosis, three women recount their pain and medical wanderings in the face of the disease

On the occasion of World Endometriosis Day, March 28, a close-up of this painful and disabling disease that affects a large number of women. Three women testify to their daily lives, their struggles, their lives, despite everything.

Endometriosis is the endometrium, located in the uterus, which sometimes invades other parts of the body, bleeds and causes unbearable pain. Angélique, Blandine, Elodie tell of all their suffering, their fatigue, the incomprehension of loved ones, family and even doctors and above all their long journey before the diagnosis.

On average, it takes 7 years for doctors to spot endometriosis. For some, the medical wandering lasts several years: "Having a stomach ache during your period is normal" they are told.

Elodie Delaune observes that her family has not been very attentive, neither has the school environment: "I was told that I was in pain for not attending classes..." explains the young woman, responsible for Bourgogne-Franche-Comté of the national patient association Endomind.

Endometriosis: some patients have no symptoms

Rakoto Nirhy-Lanto is a gynecologist-obstetrician at Vesoul hospital in Haute-Saône. It tells us more about this disease that we know little about.

From his studies, he participated in the first experiments conducted at the Besançon hospital with Professor Colette and Doctor Agnani, experiments at the forefront of research on endometriosis in France.

His explanations are clear about the disease itself: “The endometrium, which is located in the uterus, will lodge elsewhere: in the peritoneum, the intestines, the bladder or even the navel. The endometrium, which gorges itself with blood, loses it at the time of menstruation. Yes, one of my patients is bleeding from the navel. The pressure on the other organs causes enormous pain, which is further increased at the time of menstruation,” he explains.

According to Dr. Nirhy-Lanto, the symptoms are mainly pain, blood flow and infertility. Some patients experience no symptoms but are diagnosed during tests carried out to find the causes of their infertility.

From 10 to 20% of women suffer from endometriosis, 30 to 40% of them experience fertility problems.

Infertility: a consequence in 30 to 40% of cases

Because of pain in the lower abdomen, she underwent an emergency operation to remove a 10 centimeter cyst from the left ovary. During the operation, the surgeon discovers endometriosis: the endometrium has invaded several organs including the ovary and the fallopian tubes. “He gets the most out of it. On the MRI, the doctor had seen nothing,” she says. “Then I learn that I have endometriosis, without much explanation, and that I will have a lot of trouble having a baby. The doctors give me six months to get pregnant naturally otherwise it will be a PMA, Medically Assisted Procreation. Six months delay: the pressure does not help! ". She smiles today on the phone, but this difficulty in having a child is difficult to accept. Blandine Béroud benefited from three medical fertilizations which ended in three premature miscarriages. Today, she does not is only 27 years old and she still has hope.

She tried to have a baby, without success so far: an abortion for malformation of the fetus and two miscarriages. It was in 2015.

Since then, she has changed her job, too stressful and incompatible with endometriosis, and also her partner. The previous had difficulty accepting the disadvantages of this disease.

She has undergone several surgeries but does not complain: “I'm not in too much pain. It's bearable, most of the time. I have pain attacks, yes, but I'm better. Before, I wanted the whole world. Now I hope to restart the process to have a baby. But, without rushing. Without stressing…” she said.

She stayed in bed from the 3rd week of pregnancy, because of threats of miscarriage. She finally gave birth at term but then the complications followed after this pregnancy which seems, according to her, to have increased the usual pains. However, she considers that she was lucky: the diagnosis of endometriosis was made very early in her case… which is far from being a generality.

Why is the diagnosis so difficult to make?

Doctor Rakoto Nirhy-Lanto readily acknowledges that many women who suffer from endometriosis are not detected early enough.

“It's a bit our fault, doctors! We do not always think, in case of pain during menstruation, of this disease. However, we should have the reflex to do exams. A simple ultrasound is sometimes enough to see lesions. A scanner or even more effective an MRI and the diagnosis can be made! explains the doctor.

The gynecologist insists: “Yes, we have to think about it systematically and do the exams. We see women who suffer, who don't know why… When they know the name of their illness, it's really better for them! » . Naming is already recognizing that they are sick, that they are not inventing.

Better train doctors, have endometriosis recognized as a long-term disease

Elodie Delaune is responsible for Burgundy-Franche-Comté of the national association of patients, approved by the Ministry of Health, Endomind.

Endomind works with patients and also doctors and health authorities. Last advance obtained by the national president after an interview with Olivier Véran, Minister of Health: increase the number of hours devoted to endometriosis during medical studies. Currently, there is devoted to it… one hour, during the many years of the course.

This association of patients also created the first research foundation on endometriosis, precisely to better understand this disease.

Another battle horse again: to have endometriosis recognized as ALD, Long-Term Affection, for better care of patients.

Endometriosis: their daily battle

Endometriosis impairs everyday life. In addition to infertility problems, it is permanent fatigue that affects the daily lives of these women the most.

Blandine Béroud can no longer work full time, but part time. She changed employers: her parents gave her the job of saleswoman in their bathroom equipment showroom.

In addition, she carries out relational marketing work on social networks: she sells cosmetics and food supplements there. A job she can do from home and at her own pace. With her Instagram and Facebook accounts, she pursues a goal with sick women: “I want to give them hope because living with endometriosis is possible. It's not always easy but it is possible! »

She uses social networks, and her accounts on Instagram and Facebook, to "give hope" to women who have this disease.

Angélique Masson even founded her association Endolive Fées to share her experience.

Elodie Delaune, she has an interesting professional career, thanks… to endometriosis, even if it begins with a heartbreaking decision: “I was a professional, classical and contemporary dancer, but I stopped because of endometriosis. . It was a very difficult period, I was very athletic. Then, from my illness, I made a strength. I turned to art therapy. I even opened a center in Dijon which had to close because of the epidemic. I'm going to open one in Besançon. I want to help people who suffer in their body because I know these pains. Helping is my therapy.”

She is also committed to this national association, Endomind. It organizes discussion groups but also acts by creating popular events (outside the Covid period) to make this disease better known to the population and medical circles.

Elodie, like Blandine, wants to carry a message of hope: “Yes, this disease has repercussions on her sex life, her life as a couple. Yes, her femininity takes a hit, but you can work on the relationship between body and mind. We fight with our body but we can create tools to get better. The last word goes to Angélique Masson: “I live, I work, I move forward. We are all fighters. Kindness already begins with oneself. We must accept this disease and love ourselves as we are. »