#endomind

La Fondation Recherche Endométriose (FRE), créée en 2021 avec l’association de patientes ENDOmind et sous l’égide de la Fondation pour la Recherche Médicale, a pour mission d’ACCÉLÉRER LA RECHERCHE sur l’endométriose. Dans le cadre de cette mission, un des objectifs majeurs de la Fondation est de soutenir financièrement des projets de recherche fondamentale et clinique portés par des équipes…

L'#endométriose, qu'elle est cette maladie dont #LenaDunham souffre ?

Lena Dunham souffre depuis plusieurs année d’endométriose. Retour sur cette maladie qui touche presque 1 femme sur 10. Il y a quelques semaine, l’actrice Lena Denhuma annulait la promotion de la cinquième saison de sa série diffusée sur HBO, Girls. La jeune femme a fini par expliquer ce qui se passer : « Comme beaucoup d’entre vous le savent, j’ai de l’endométriose, une maladie qui affecte à peu…

15 years were required in order to establish a diagnosis and put a name on her disease. Like in most endometriosis cases, Solène's bladder, intestines and colon are affected. Offshouts managed to reach her sciatic nerve and back, which often leads to paralysing sciatica. Solène recently had skin cells removed from her right arm. Ongoing analysis will determine wether she suffers from a rare form of subcutaneous endometriosis

" During the crisis, I spend most of my time in the toilet, I even fall asleep there. I think I'm going to arrange things differently there so I can fall asleep more comfortably…"

For our first meeting, Solène seem very reserved and shy, but I saw her during the protest, and I think one should really see beyond appearances. We talk about many things, she unveiled some of her secrets, but one thing kept coming over and over again… Solène undermines her sufferings compared to other Endogirls; but regardless of the intensity of the pain, the pain is still there.

Johanna starts by stating that she’s somewhat luckier than other girls, as she was quickly diagnosed. She suffered since she was a child, about 12 years old, when cysts were discovered on her ovaries. She was then prescribed the pill in order to soothe the pain, and told that the cysts would disappear during puberty. Pain came back when she was 18, and after several medical consultations, the word endometriosis was spoken for the first time. It’s only at 22 years old and after huge sufferings, that she was finally properly taken care of and operated. She’s now better, she tries to forget the disease, if only forcefully… But the pain has come back recently, accompanied with the difficulties that come with the disease.

« After the surgery, I voluntarily blocked out the disease. I was on the pill, I wasn’t suffering anymore. My specialist had indeed been adamant that if I followed the treatment carefully, there shouldn’t be any reason for a relapse… »

Johanna may have put a thick veil on the disease for many years, but I believe that it has caught up with her since the pain came back. She is well documented, and has a dynamism that some would envy her. A way, perhaps, of taming the pain ?

Ariane is severely inflicted by endometriosis, which brings on ceaseless contractions and heavy bleading during the most difficult periods of time. Many of her organs around her lower abdomen are affected, and as a result, she has to follow a very strict diet.

Ariane is under hormonal treatment which provoques an articifial menopause, but her body has been greatly fragilised  and the side effects can become debilitating on a daily basis.

"All these contractions make me feel like I'm giving birth to my son again every day… It gets old! "

Ariane is an incredible woman, humble, strong, and an amazing artist. She's endearing, just like many women I met whilst working on this project, and who do not deserve these overwhelming physiological and also psychological sufferings, as the implications of this disease spreads beyond the realm of the body.

Since her first period at 11, she immediately knew that feeling so much pain wasn’t normal. Laure suffers from a rare form of endometriosis which affects her diaphragm and her lungs and causes pneumothoraxes. For 15 years, she was put on artificial menopause in order to relieve her symptoms after several « cleaning » surgeries where parts of her diaphragm and lungs were removed. Laure faced several refusal from the medical community when pleading for hysterectomy.

« I always knew, since I was very young, that I wouldn’t want to bear a child. So much suffering to be a woman, to be a mother… I prefered adoption, to give a chance to a child. I knew that if I was to give birth, that would be the end of me, it was too dangerous for me… »

Laure fought for years before she found a doctor willing to perform a complete hysterectomy on the 4th of February 2014. She can finally stand upright, even if her body is covered with scars, I met a woman with a smile on her face, light in her eyes, a woman who was released from her boulder. Laure is the mother of an adopted little Vietnamese girl. At 40 years old, she can finally start living her life.