she tells about the nightmare of endometriosis

she tells about the nightmare of endometriosis

On the occasion of the European week of prevention and information on endometriosis, we collected the testimony of Cecile. Diagnosed too late, she is fighting today for other women.

It is a devious evil that affects about one in ten women of reproductive age. “About” because gynecological disease (characterized by the presence of uterine tissue outside the uterine cavity) is so little known, little understood, that the figures remain vague and approximate. However, endometriosis does damage in the body of women. 30 to 50% of affected women are victims of infertility, 25 to 40% have pain during sexual intercourse. This condition, which is handicapping, even costs 9.5 billion euros per year (direct medical costs and indirect costs such as absenteeism or reduced efficiency at work). If speech has started to become free in recent years, in particular through personalities like Laetitia Milot or Lorie, and if the public authorities begin to seize the subject, the road remains long.

This fight to raise awareness and help other women is the one that Cecile Togni chose. Member of Info-Endometriose, association born from the meeting between the surgeon-gynecologist Chrysoula Zacharopoulou and the actress, director and producer Julie Gayet, Cecile gives us her battle against the disease, diagnosed very late. Here is his testimony.

“I discovered that I suffered from endometriosis when I wanted to have a baby. At 37 years old, I always had pain from the first day I started menstruating. At 15, I rolled on the floor in pain Sometimes I just couldn’t get out of bed, and I didn’t understand why I was in pain and not my cousin, for example. My mother replied: ‘Well, you’re different, that’s all.’ And then , gradually, we start to live with this suffering. We take it upon ourselves. When I said that I could not go to school the day of my period, I passed for a liar. is nothing, “they replied. It marks a teenager, that. At 18, I had a kind of infection and I had told my parents that I had to stop my period for a while to ‘rest my cycles’, but the word endometriosis has never been spoken.

The worst part is that the more endometriosis sets in, the more violent it is. They are needle shots in the belly, even stabs, excruciating pain in the kidneys. We inflate. It is sharp and violent. It prevents being a free woman. For two, three, four or five days a month, we know that we will suffer. We anticipate this nightmare every month.

We also have painful intercourse or when we go to the bathroom. It’s all the time. I was a DJette, I mixed at parties and I couldn’t cancel. I was on medication and I was clenching my teeth again. No choice. Your best friend becomes your hot water bottle. The heat eases the pain a bit. And you chain anti-inflammatories, hot showers. You hack …

I got married and we sought to have a child with my husband. We did IVF and doctor appointments. It did not take and we were not sure why … A doctor made me a laparoscopy (surgical technique which allows, by a small opening of the wall of the abdomen to observe the interior of the pelvic cavity) and when I looked at the report and the radio, I saw like black spots on my uterus. All over. So endometriosis. The doctor hadn’t alerted me.

I spoke about it to a friend who advised me to contact Dr Chrysoula Zacharopoulou, gynecologist specializing in endometriosis. It was she who told me that I had deep endometriosis. We were in October 2016 and I had surgery in December. A heavy operation which resulted in a month of sick leave.

Today, I am 42 years old, and I begin to despair of having a child, it is the greatest misfortune of my life. I did tons of IVF, artificial inseminations and nothing. I was relentless on me when it could not work because of my endometriosis …. I was so poorly taken care of that I was told that ultimately, everything I had done would have been useless. With my husband, we fight so much that after a while, we tell ourselves that it should not rot our lives either.

All this pain, I use it to help other women by getting involved in the Info-Endometriosis association: it’s the only way I can move forward and it makes me stronger. I am fighting for an early diagnosis, for more doctors to be trained in the disease, for more specialized centers. Because if I had been diagnosed at 18, my journey might have been different and I might have two children now.

I can see on the Instagram account of Info-Endometriose the testimonies of young girls, their pain … It is acquired to suffer martyrdom. ‘You are a woman, suffer in silence’. But we are in 2020, shit! It’s like the taboos surrounding our rules. It’s crazy that blood is still represented blue in pubs for hygienic protections. What world do we live in? It is so contemptuous.

We can raise awareness on our side, but if there are no means put in place, it does not work. And there are many women who suffer from endometriosis, more than you might think. Even the WHO (World Health Organization) cannot count the exact number of women affected. One in 10 women? We know nothing! But it is a social disease, clearly. Whenever I talk about it, I can tell you that there is clearly more than one in 10 women who suffer from it. That’s why it’s so important to talk about it. “

To note on our agenda this Sunday March 8:

Round table from 4 p.m. to 6.30 p.m. at the Paris City Hall Auditorium (to follow live on Instagram and Facebook)

Endometriosis in 2020: where are we?


  • Dr. Erick Petit, Radiologist and endometriosis expert, author of Tout sur endometriose
  • Pr. Émile Darai, Surgeon, specialist in gynecology-obstetrics and reproductive medicine – Maternity
  • Dr. Daniel Vaiman, Researcher at the Cochin Institute and member of INSERM
  • Dr. Marina Kvaskoff, Researcher and epidemiologist at INSERM
  • Élise Thiebaut, Feminist journalist and author of Ceci est mon sang at Éditions La Decouverte.
  • Énora Malagre, Actress and author of A cry from the belly at Éditions Leduc.S
  • Yasmine Candau, President of the Endo France association
  • The members of the Chrysoula Zacharopoulou association, Julie Gayet, Cecile Togni-Purtschet and Thomas Dubois


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