Axelle Ayad N’Ciri, suffering from endometriosis, was treated at Lutéran for five years. A drug that “saved his life” while putting him at risk of meningioma. She is a member of the scientific committee responsible for reassessing the indications for this treatment.
Axelle Ayad N’Ciri is the voice of women suffering from endometriosis on behalf of the association Endomind, as part of the public consultation on Lutényl and Lutéran treatments and the risk of meningioma. Author of the book Lonely Patient and founder of Mapatho, whose objective is to quickly connect chronically ill patients with the right medical contacts, she tells Top Santé about her own wandering and her quest for information.
“I had my period very young when I was not 10 years old. Very quickly, I started to suffer, to have a lot of acne, to be blocked in me by pain on menstrual days. When I was 14, to relieve me, I was put on a pill, without saying anything about my pain. Between the ages of 14 and 23, everything was fine. At least I no longer felt the consequences of what I later learned was endometriosis. Until I decided to change my contraception and wear a vaginal ring.
“Consult a gynecologist, there is something wrong, miss”
At this point, I am 23 years old, and my balance is collapsing. The pains start again to the point that I feel uncomfortable at my workplace. Taken urgently to the hospital, a doctor tells me that I have an attack of appendicitis. But I consult a second, which refutes this theory: “It’s not a gastrointestinal problem, it’s a gynecologist, you should go for a consultation, something is wrong.“
I’m going to do a radio and the manipulator says to me: “You may have endometriosis“. I don’t know what it is, I’ve never heard of it, and I don’t know who to turn to. So I ask around for three months, and they end up advising me to go to Cochin hospital, where a department specializes in infertility. My doctor, a specialist in endometriosis, suggested an immediate operation, a laparoscopy, to remove the adhesions that are stuck in my ovaries. I am 23 years old, I have been diagnosed with a disease about which I do not know much and I am told about infertility. But my doctor gives me medication to take continuously, and tells me that I can live my life. So I go to follow my project and I settle in China, as planned.
Against endometriosis, two years from Lutéran
This medicine is Lutéran. Hormonal treatment which literally saves my life. I take it non-stop between 2013 and 2015. I no longer have my period, I no longer have stomach pain, I no longer have any side effects. I am apparently doing well. But this balance did not last, because after two years, my pains returned and forced me to return for treatment in France. The adhesions (or lesions) are back, at least as strong as before.
There, the doctors’ discourse changes radically: we must no longer operate, this would risk playing on my ability to have children one day. Besides, children, we should think about it very quickly, I am told. At 26, I entered the PMA course. But I suffer from something else, for some time I have had migraines with aura. I am discovered in addition to other pathologies: polycystic ovaries and hypothyroidism. Each PMA stimulates my ovaries and my hormones tremendously and I suffer a lot. So, between two attempts (which never work), I am authorized to take the medicine that gives me my life back, Lutéran. I dream that PMA is over so that I can be on this treatment again and stop suffering.
Feel like my brain is too big for my head
In 2020, I definitively give up on assisted reproduction and I ask the doctor to put me back on Lutéran continuously. My migraines are coming back full force, I have the feeling that my brain is too big for my head. My doctor tells me that things are starting to emerge about this drug, that we wonder about its side effects … But at that moment, I say to myself: I have no other way to relieve the endometriosis and the Nurofen helps me resist migraines. So I continue. I try other treatments, but the side effects are terrible: weight gain, crippling pain, continuous periods, acne … Nothing works as well as Lutéran. After the diagnostic wandering, the infertility wandering, I saw the drug wandering.
However, I am learning more about this drug, which can cause a meningioma (brain tumor). Benin in the purely medical sense of the term but certainly not without gravity or consequences since it can lead to pain, epilepsy, vision problems … I have to choose between plague and cholera: stop everything and let it go. endometriosis progress, take Lutéran and risk a brain tumor, or choose another treatment whose effects are unbearable.
Tomorrow, what solutions for patients?
I represent Endomind in the public consultation on the risks associated with Lutéran and Lutenyl (Editor’s note, the ANSM issued new recommendations on January 12). Lutéran is a comfort today but a huge risk in the future. But what are the alternatives for women who suffer from endometriosis? My goal is to bring the voice of women who take this drug so that they have access to all the necessary information and that they have the right to a tailor-made medical course, with regular MRI scans to monitor the possible birth of a child. meningioma. “
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