Anna, 36, 15 years old in Lotéran and Lotényl- 1 Méningioma
I have suffered from endometriosis and adenomyosis since I was 20 (I was lucky, the diagnosis was quickly made). I have been operated several times, and I was given so much treatments that I no longer know what I had. I asked my gynecologist this summer, I felt it reluctant to tell me everything. She told me that last year, she had told me the risk of meningiomas, but that she did not know anyone who had it, so that there was no reason for me to have (stupid reasoning between us, how the patients of a single gynecologist are representative of something!).
In short, she did not want to take my file out, but told me that I had taken Lotéran and Lotényl. For her, no doubt to continue the treatment given the benefit/risk.
I still look for the internet a little and came across your association. And fortunately!
I asked my doctor to spend an MRI.
And VLAN: a frontal meningioma.
I am in a black anger in front of the incompetence of the doctors, who either deny or take out the umbrella, as was the case for a friend where the gynecologist told him that the Lotéran and Lotényl were now prohibited. Or c ”is false!
I wanted to call my gynecologist to know what to do, she makes me answer that she is not there, the secretary closes.
Not even able to tell me if I have to stop treatment or not!
Fortunately you are there to find out who I have to turn!
My attending physician is lost and wanted to send me to a neurologist.
I find it all lamentable, everyone only thinks of Androcur, and now there, with other treatments, it looks like everyone doesn't care!
Association notes:
- We recall the information of the ANSM of 06/17/2020: Lotényl/Lotéran and Generics: preliminary recommendations following the confirmation of the Méningioma sur-risk-Information point
- The 1st alert dates from 02/07/2019: Luteran (Chlormadinone acetate) and Lotényl (Nomestrol acetate) and their generics: cases of meningioma reported - Information point
- Other meetings will take place at the ANSM, where the association will be invited, to be able to discuss the conduct to face these two drugs (as was the case for Androcur).
Other testimonies here: https://amavea.org/temoignages/
Anna, 36, 15 years old in Lotéran and Lotényl- 1 Méningioma
