Lutéran, Lutényl, Androcur or even Surgestone: For many women suffering from endometriosis, very painful and bleeding periods, acne or disorders associated with menopause, these progestin-based hormonal treatments are the solution. But that was before. Before January 2021 and the National Medicines Safety Agency (ANSM) opinion that the “benefit-risk balance” of Lutenil, Lutheran and their generics was “negative in a certain number of indications”. The reason: An increased risk of developing meningioma — a specific brain tumor — is associated with long-term use of one of these drugs. In a new opinion in July 2023, ANSM added Colpron, Depo Provera and Surgestone to the list.
Since then, some of these drugs are no longer sold in France, and for others, the continuation of treatment is evaluated on a case-by-case basis. But in practice, what support has been provided since then? On International Women’s Day this Friday, 20 minutes This gives a voice to patients, some of whom find themselves without therapeutic options.
“I had a meningioma and my endometriosis came back.”
For ten years, Delphine took Lutheran consistently to prevent her endometriosis. Until the 40-year-old says, “The vision in my right eye started to fail. My eye was popping out, I was feeling sick and had a headache, so I had a brain MRI. Result: Meningioma measuring more than 6 cm. I had to stop my treatment immediately and have a craniotomy. Since then, I have been living with the after-effects, and my endometriosis which has rapidly returned and for which I have not been given a solution.
Helen, now 36, started taking Androcar in 2006, “when an endocrinologist diagnosed me with polycystic ovary syndrome (PCOS). I was warned about the risk of meningioma in 2018 and have follow-up brain MRIs every two years. All was going well until an MRI in October 2022, which revealed two meningiomas, one very close to the optic nerve. I had to stop my treatment and was advised all hormonal contraception. No doctor offered me any alternative treatment.”
For these patients, “the discovery of an intracranial tumor is an event that completely turns their lives upside down,” we lament at Amavea, a support organization for sufferers of meningiomas linked to Androcar, Luteran and Lutenil and Progestin. , is approved by the Ministry. Health. For them, the entire treatment strategy must be reconsidered in relation to this new disease, which, in most cases, suddenly takes second place to endometriosis (or other conditions).”
Regular monitoring and case-by-case evaluation
“If a meningioma is found, the treatment must be definitively stopped, and the course of action must be discussed with the neurosurgeon”, whether Lutheran or Androker, confirms the ANSM. However, “in some women with asymptomatic meningiomas, after multiple consultations between the gynecologist and the referring neurosurgeon, hormonal treatment can be continued under strict supervision,” Amavea clarifies. “It is true that in most cases, these particular meningiomas are asymptomatic and regress when treatment is discontinued,” Dr. Odile Bagot, gynecologist, author of the Mem Gyneco blog and book confirms. Vagin et Cie, we tell you everything! (Ed. Carey). For these patients, we evaluate the situation on a case-by-case basis in consultation between different specialists (gynecologist, neurologist, etc.).”
A breakthrough that brought hope to Celine, 49, who also stopped her treatment after discovering her meningioma. “It has subsided but since then I have had a lot of pain in my ovaries and my endometriosis is progressing, so I would prefer to take Luteran again, at least I will have peace of mind. My neurosurgeon understands this and if my risk-benefit balance assessment allows it, I can have it again with control MRIs every six months (instead of one year). It was up to me to find a gynecologist who would agree to prescribe it to me.
But “many people don’t want to prescribe it anymore, and labs rarely produce it anymore,” Dr. Bagot warns. So this drug, although it is beneficial to many women, is almost impossible to find today.”
Therefore, “depending on the case, we try to find an alternative,” continues the gynecologist. But when there isn’t, patients have to deal with their problems.” Like Jocelyn, 69, “Endometriosis was treated with Lutenil for ten years. The neurosurgeon treating me for my meningioma told me to stop treatment, which led to My bleeding periods returned. The only solution offered at that time was a hysterectomy. Fortunately I already had children and my meningioma was effectively managed.
Some possible options
On the other hand, for patients suffering from endometriosis, PCOS or bleeding periods and who do not show any signs of meningioma, some therapeutic options are possible.
“Once we stop the treatment, we definitely won’t develop meningioma again,” Dr. Bagot assures. Therefore, those who have taken progestin, those who are no longer taking it, and those without neurological symptoms do not need to have an MRI. As for alternatives, some may benefit from a progesterone IUD, which has no increased risk of meningioma associated with it, and which is a particularly good indication for period bleeding. And for endometriosis, there are other specific progestin pills,” Dr. assures Bagot.
This is the case of Emma, who stopped Lutheran which she had been taking continuously for five years, never showed symptoms suggestive of meningioma and therefore did not have her brain MRI. “I have debilitating endometriosis: when I get my period, I pass out, I vomit, and I have seizures at any time during my cycle. It is impossible for me to live a normal professional life, so I cannot do without treatment. Fortunately, I was offered an alternative and for the past six months I have been taking the pill containing drospirenone, a different type of progestin. It is not reimbursed, but I am very relieved to have a new effective treatment. And to date, “(this family) has not shown an increased risk of meningioma associated with progestin use,” the ANSM suggests. But “it cannot be excluded. Additional studies are necessary, especially in view of their increased use.
