“We say the same suffering”. Endometriosis affects 200 million women and they want to be heard

2023-05-24 15:33:08

They come from 23 countries, speak 7 languages, but unite their voices to highlight this deaf disease that devours them: Endometriosis. These words of women from around the world were compiled by Aynoa, a Landaise, in this touching documentary “We are 200 million – Code Name Endometriosis”, screened on June 2 at the University Hospital in Pessac.

Aynoa is a songwriter. In the light, she shines with her art, but in the shadows, Christelle, in civilian life, writhes in pain, linked to her endometriosis. “I had 19 years of delay in diagnosis while being in Paris, rue de Rivoli, in the beautiful districts”, she explains.

Like so many others, Aynoa had to fight this nameless disease alone
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© Jean-Louis Lanne

One day, she consults a radiologist, and manages to see things from the inside, “ I have my body ravaged”. After these “two years of medical wandering, and in agony”, the young woman decides to go to the southwest and communicate on social networks about this illness that is eating away at her. She was then approached by associations and came into contact with other affected women.

In 2020, she plans to collect the testimonies of women she has met to make a short film. But very quickly, the project takes another turn and becomes a documentary, pushed, among other things, by the media coverage of the subject, which begins to be done.
“The disease had already come out of the shadows thanks in particular to testimonies”, like that of Imany (singer and godmother of Endomind), “but there were terrible injustices on the ground”.

Because if this disease is made known, the specialists are not all trained. At the time, “the gynecologist complained that it was a fashionable disease”, Aynoa tells us.

Added to this is the weight of pain and guilt. “Along with those symptoms and pains, there was always that specter of imposture.” remembers Aynoa, because those around you can regularly make inappropriate and hurtful remarks. “It’s not possible that you’re in so much pain, it’s not possible what you’re saying” she often heard.

Aynoa extends its search for testimonials. “I manage to contact people in Malaysia, Gabon, Canada, etc., and I realize that I’m not going to be able to make a short video of a few minutes.”

With these women, whatever their culture, we say the same words, the same suffering.

Aynoa, documentary filmmaker.

with web writing France 3 Aquitaine

At the origin of endometriosis, “ce are cells which are similar to the endometrium which will be found at each cycle outside the endometrium”, explains Aynoa. “With each cycle, the endometrial cells are destroyed and evacuated. These will certainly bleed, but are not evacuated. They can thus create adhesions between the organs, cysts, and damage them.”

With modesty sometimes, but always with great courage, they talk about their life with the disease
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© Aynoa

The documentary filmmaker tells us about her journey, which almost inevitably involves an operation, a celioscopy, in order to reduce the phenomenon, momentarily. “The doctor sees me in 5 minutes and we operate on you”without warning, she comes out thinking she is cured. “Obviously, we touch the organs and we touch the tissues and we can damage the ovarian sphere. And after that, I am left in nature”. And the disease takes its place again, new cells grow out of the endometrium.

This experience, many other women have lived it, she explains to us, strengthened by these testimonies from the four corners of the world. “There are a lot of dramatic consequences of the operations”. So, “A Quebec woman who loses the use of a kidney, another has a piece of intestine removed.” “In my case, the operations were useless. It is a disease that progresses over time.”

These women testify in front of the camera
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© Oynoa

As if the pain were not enough, often it is accompanied by the impossibility of giving birth. 40% of women with endometriosis cannot have children. Aynoa, she managed to give life, but it was not won. During the interview, we noticeably hear the chirping of her 3-month-old baby girl. She explains with modesty, so as not to hurt her sisters in misfortune: “I was pregnant, while I was screwed up by an operation”. Because, she continues, she had no initial fertility problems. On the other hand, after this famous operation, “my ovarian reserve drops dramatically when I was operated on in Cochin in Paris by spawners in 2014″.

We must not have hatred towards society, the medical profession, we hold hands and we move forward together

Aynoa

This documentary is accompanied by a written soundtrack composed by the artist author Compositor.

Tickets are already available and at free prices. Part of the earnings will be donated to the AFENA (Endometriosis sector association of New Aquitaine. Its mission is to improve care and care sectors, in particular by creating a care pathway

“With a general practitioner, a gynecologist, among others. That the course is traced, that’s a big step forward” concludes Aynoa.

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