[Témoignage] "The Lutéran is a comfort for today and a risk for tomorrow"

Axelle Ayad N’Ciri carried the voice of women suffering from endometriosis on behalf of the association Endominate, as part of the public consultation on Lutényl and Lutéran treatments and the risk of meningioma. Following these exchanges, the Medicines Agency (ANSM) has restricted the indications for these medicines, in order to limit the risks for these patients who have sometimes been in treatment for years, without being aware of its adverse effects. In the spring, information materials will be issued to patients, said the ANSM on February 9.

Author of the book LonelyPatient and founder of Mapatho, whose objective is to connect chronically ill people with the right medical contacts quickly, Axelle Ayad N’Ciri tells Top Santé about her own wanderings 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 at home by pain on the days of menstruation. At 14, to relieve myself, they put me on a pill, without putting words to my pain. Between 14 and 23, everything was fine. At least I no longer felt the consequences of what I would later learn was endometriosis. Until I decided to change contraception and wear a vaginal ring.

“Consult a gynecologist, there is something wrong, miss”

At that time, I am 23 years old, and my balance is collapsing. The pains start again to the point that I feel unwell at my workplace. Taken urgently to the hospital, a doctor tells me that I am having an attack of appendicitis. But I consult a second one, which refutes this theory: “It’s not a gastro problem, it’s gynecology, you should go consult, there is something wrong.“

I’m going to do an X-ray 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 question my entourage for three months, and they end up advising me to go to Cochin Hospital, which has a department specializing in infertility. My doctor, a specialist in endometriosis, suggested an immediate operation, a laparoscopy, to remove the adhesions that are jamming my ovaries. I am 23 years old, I have been diagnosed with a disease that I don’t know much about and they talk to me about infertility. Corn my doctor gives me a medicine to take continuously, and tells me that I can live my life. So I leave to follow my project and I settle in China, as planned.

Against endometriosis, two years of Lutéran

This medicine is Luteran. hormone treatment which literally saved my life. I take it non-stop between 2013 and 2015. I no longer have my periods, I no longer have stomach pains, I no longer have any side effects. Apparently I’m fine. But this balance did not last, because after two years, my pain returned and forced me to return to France for treatment. The adhesions (or lesions) are back, at least as strong as before.

There, the speech of the doctors changes radically: it is not necessary any more to operate, that would be likely to affect my capacity to have children one day. Besides, children, we should think about it very quickly, I am told. At 26, I am entering the PMA course. But I suffer from something else, for some time I have migraines with aura. I was discovered in addition to other pathologies: polycystic ovaries and hypothyroidism. Each PMA stimulates my ovaries and my hormones enormously and I suffer a lot. So, between two attempts (which never work), I am allowed to take the medicine that gives me back my life, Luteran. I dream that the assisted reproduction is over so that I can be on this treatment again and stop suffering.

Feel like my brain is too big for my skull

In 2020, I am definitely giving up PMA and I am asking the doctor to put me back on continuous Luteran. My migraines are coming back full force, I feel like my brain is too big for my skull. My doctor tells me that things are starting to emerge on this drug, that we are wondering about its side effects… But at that moment, I say to myself: I have no other way to relieve the pain. endometriosis and Nurofen helps me resist migraines. So I continue. I try other treatments, but the side effects are terrible: weight gain, debilitating pain, continuous menstruation, acne… Nothing works as well as Luteran. After the diagnostic wandering, the wandering against infertility, I live the medicinal wandering.

That said, I’m 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 cause pain, epilepsy, visual disturbances… I have to choose between the plague and cholera: stop everything and let the progress, take Luteran and risk a brain tumor, or choose another treatment whose effects are unbearable.

Testimonials from women who challenge

Axelle, who was able to attend the hearings of patients during the consultation organized by the Medicines Agency in October 2020, remembers chilling testimonies, of women with dramatic side effects: hair loss, loss of libido, loss of energy, consequent weight gain, acne, depression and of course, those famous “benign tumors” in the brain. Tumors that are not benign when we measure the impacts and the severity of the sometimes irreversible consequences such as repeated epileptic seizures.

She remembers this woman, who says that when she was 37, she asked her doctor to have her tubes tied because she did not want to have children. “We refused her, on the pretext that she might regret it. And we imposed a treatment on her instead, in order to prevent any pregnancy, without mentioning any related risk: Luteran/Lutenyl. The treatment is going very badly and her eye swells, she develops a meningioma very close to her optic nerve which can cause her to lose sight in her left eye.After an operation, this woman ends up with hemiplegia and part of the skull bone must then be taken away from him.”