Fight endometriose

Reportage photographique sur les femmes atteintes d'endometriose

[endogirls-blog]

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.

© Laetitia Insousciance

[endogirls-blog]

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 ?

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[endogirls-blog]

Soizick says she’s lucky, because unlike many women, her endometriosis didn’t produce any symptoms until 2012. The name endometriosis then only appeared in 2012. Prescribed with Decapeptyl for a month, followed by a permanent presciption of Lutenyl until mid-2013. Her digestive system is affected, her ovaries stuck to her uterus and her uterine tubes are upside down as a consequence. Even a « cleaning » surgery wouldn’t allow to free them and allow her to naturally conceive.

« My mother supports me since the very first signs, she was there with me during the demonstration. She had taken a leave from work to support me for the first in vitro fertilisation. It feels really good to be supported by relatives, as opposed to the uncaring attitude of certain doctors or even members of the family ! »

I feel that this woman has created for herself a strong and thick protective shell ; does pain forces women to do so ? But in her deeply gentle eyes communicates a sense of maturity and confidence. I can also see a great fatigue, beyond the protective shell, settling on a face that pain can change all of a sudden.

© Laetitia Insousciance

[endogirls-blog]

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.

© Laetitia Insousciance

[endogirls-blog]

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.

© Laetitia Insousciance

[endogirls-blog]

Flavie has been on a long sick leave for the past 9 months. Her endometriosis is assessed at stage 4 and she already underwent a coelioscopy. Her ovaries, her bladder and colon suffer lesions and cysts that provoke pain on a daily basis.

« With the disease, you need to learn to accept a new body, the transformation induced by the hormone intake, the weight gain… I no longer recognise myself. It doesn’t help having a normal social life. I no longer go out because of the pain, I stay at home lying in bed and trying to find a position which relieves my pain. I don’t see anyone, my family is far away and transports are too much of an ordeal for me. I decided against a new start for my relationship when we finally put a name on my disease. I didn’t want to impose my suffering, the possible infertility, and the difficulty to have sexual intercourse because of the pain and the lesions. »

Flavie is a tiny woman full of energy, despite her psychological and physical sufferings. She let me photograph her very naturally, without fuss, whilst she was struck with pain. It was an honour for me to photograph her and to get to know her.

© Laetitia Insousciance

[endogirls-blog]

Mathilde was prescribed with the pill from 15 years old onwards in order to relieve the pain that occured since she was 11. She stopped the pill in 2007 due to a tumor on her right ovary, after which the pain came back, accompanied by nausea and losses of consciousness. The verdict falls five years later during hospitalization : blood loss in the abdomen due to a burst cyst. At 34 years old, she ears the word endometriosis pronounced for the first time as she is hospitalized for a peritonitis.

« Nobody sees us, believes us. People tell us we’re crazy, and we believe them. Even doctors send us to psychologists… There is a certain relief when the illness is finally named, it allows to do some research, and most importantly to realise that we’re not isolated. »

Mathilde is my best friend, and she’s the reason why I started this reportage. For, when you have an Endogirl in your relatives, you very quickly start feeling powerless. What can you do in the face of pain ? Not much ! Simply getting involved at your own simple level, attempting to be more than a supporting shoulder. Simply be present, no matter what. At the moment, Mathilde has to look for another MAP centre and she will undergo surgery in May in order to increase her chances of procreating.

© Laetitia Insousciance