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

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 about all their suffering, their fatigue, the incomprehension of relatives, family or even doctors and especially their long journey before the diagnosis.

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

Elodie Delaune notes that her family has not been very attentive, nor the school environment: “I was told that I was in pain for not attending classes …” explains the young woman, responsible for Burgundy-Franche-Comté of the national association of patients Endomind.

Endometriosis: some patients have no symptoms

Rakoto Nirhy-Lanto is an obstetrician-gynecologist at the Vesoul hospital in Haute-Saône. He tells us more about this little-known disease.

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

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

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According to Dr. Nirhy-Lanto, symptoms are mainly pain, blood flow and infertility. Some patients do not experience any symptoms but are diagnosed during examinations to find the causes of their infertility.

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

Infertility: a consequence in 30 to 40% of cases

  • Blandine Béroud is from Lons-le-Saunier in the Jura, she lives in Oyonnax. She learned everything at the same time.

Because of pain in the lower abdomen, she undergoes an emergency operation to remove a 10-centimeter cyst on the left ovary. During the operation, the surgeon discovers endometriosis: the endometrium has invaded several organs including the ovary and the tubes. “He takes as much away as possible. On MRI, the doctor had seen nothing “ she says. “Then I learn that I have endometriosis, without being given much explanation, and that I will have a lot of trouble having a baby. Doctors give me six months to get pregnant naturally, otherwise it will be PMA, Medically Assisted Reproduction. Six months of delay: the pressure does not help! “. Today she smiles 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 is only 27 years old and she remains hopeful.

Before, I wanted to the whole earth. Now, I hope to restart the process of having a baby. But, without hurry. Without stressing.

Angelique Masson

  • Same obstacle course for Angélique Masson, 33 years old today and who lives in Haute-Saône, in Grange-la-Ville near Villersexel.

She tried to have a baby, without success so far: one interruption due to fetal malformation and two miscarriages. It was in 2015.

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Since then, she has changed jobs, too stressful and incompatible with endometriosis, and also a companion. The previous one had difficulty accepting the inconveniences of this disease.

She has had several surgeries but does not complain: “I don’t have too much pain. It’s bearable most of the time. I have pain attacks, yes, but I’m getting better. Before, I wanted to the whole earth. Now, I hope to restart the process of having a baby. But, without hurry. Without stressing… ” she says.

  • Elodie Delaune, she managed to have a daughter, Elina, aged 6 and a half, but at what cost!

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

Operation of a uterus for endometriosis at the University Hospital of Nancy

© Alexandre MARCHI – maxPPP

Why is the diagnosis so difficult to make?

Dr Rakoto Nirhy-Lanto readily admits that many women with endometriosis are not detected early enough.

“It’s a bit the fault of us doctors! We do not always think, in case of pain during menstruation, this disease. However, we should have the reflex to take exams. A very simple ultrasound is sometimes enough to show 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 disease, it is so much better for them! » . Naming is already recognizing that they are sick, that they do not invent.

Better train doctors, recognize endometriosis as a long-term disease

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

Endomind works with patients and also doctors and health authorities. Latest progress obtained by the National President after an interview with Olivier Véran, Minister of Health: to increase the number of hours devoted to endometriosis during medical studies. Currently, is devoted … an hour, during the many years of studies.

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

Another hobbyhorse still: recognition of endometriosis in ALD, Long Term Affection, for better patient care.

Pain: first symptoms of endometriosis

Pain: first symptoms of endometriosis

© Frédéric Cirou – Maxppp

Endometriosis: their daily struggle

Endometriosis cripples everyday life. In addition to infertility problems, it is permanent fatigue that affects the daily life 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 relationship marketing work on social networks: she sells cosmetics and food supplements. A job that 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 easy every day 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.

I was a professional, classical and contemporary dancer, but I quit because of endometriosis.

Elodie Delaune

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 quit because of endometriosis. It was a very difficult period, I was very athletic. Then, from my illness, I gained 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 are in pain in their body because I know this pain. Helping is my therapy. ”

She is also involved with this national association, Endomind. It organizes support groups but also acts by creating popular events (outside the Covid period) to raise awareness of this disease among the population and medical circles.

Yes, this disease has repercussions on the sexual life, the life of a couple.

Elodie Delaune

Elodie, like Blandine, wants to carry a message of hope: “Yes, this disease has repercussions on her sex life, her married life. 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. Benevolence already begins with oneself. We must accept this disease and love ourselves as we are. “

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