For several weeks now, the Mirena IUD has caused a stir on the web. Thousands of carriers of this contraceptive accuse him indeed of causing side effects, sometimes serious.

This is evidenced by the numerous testimonials posted daily on the social networks of these women who suffer from painful or even disabling pain, and regret not having been sufficiently informed of the risks involved in this hormonal device.

Calls for help that led to the creation of a victims' association, SVH Stérilet Vigilance Hormones, chaired by Marie-Pierre Le Boiteux.

His mission ? Work hand in hand with the National Agency for the Safety of Medicines and Health Products (ANSM) so that patients are better informed by their gynecologists about the deleterious effects of Mirena.

She answers our questions about this collaboration and the main missions of the association.

  • What is your work with ANSM?

"We had already had a first meeting with the ANSM on May 19, 2017. It was a contact and a meeting so that the association could give its demands and explain what it had noted.

Our second meeting took place on June 14th.

The doctor in charge of the gynecology-endocrinology department was present as well as two lawyers and four people in charge of pharmacovigilance.

We have touched on many points, starting with pharmacovigilance reports.

They gave us a lot of advice so that they are better realized. Indeed, they realized that some files could not be processed because many women do not fill them correctly. I find this very positive because it proves that the ANSM really takes into account our alerts.

We also addressed the problem that we consider most important: information.

We are working together on a communication tool that will serve to inform women during the consultation that takes place before the pose.

The goal is for women to have the choice and to be aware of all the contraceptives available to them. Many, especially those in their forties, may not be familiar with all existing contraceptive methods.

We also want that when a woman agrees to have a Mirena IUD inserted, she receives information about known side effects. It is necessary that the woman leaves her gynecologist consciously knowing what she risks by opting for the Mirena and that she can be vigilant about the side effects.

Regarding the unknown side effects, it will be notified on this medium that any "strange" effect should be reported.

Finally, the ANSM is also aware of the problems of care offers.

Some gynecologists, overloaded, do not necessarily have the time to make specific interrogations, which is a pity.

So we try to think of a way to improve things. We must meet again next July. "

  • What can you tell us about the ongoing Mirena investigation?

"It focuses on the psychological disorders reported by many women, we did a survey on the site and sent our results to the ANSM.

As a result, out of 5000 women who responded, 80% said they had psychological problems since the installation of a Mirena.

A percentage taken very seriously by the ANSM, knowing that some of these disorders are not notified on the record.

The Bayer laboratory must also give the reports it has in its possession for the survey conducted at European level.

  • What new actions do you plan to carry out with the association?

"We are contacting specialists to work with us to put several actions in place.

We too, on our side, want to do prevention and information and the ANSM agrees.

As proof, they provided me with educational resources to help us train.

This would take several forms: a regular live-chat, perhaps once a month, with a different specialist each time (gynecologist, endocrinologist, naturopath, psychologist, sexologist).

We also want to organize online seminars.

Finally, we want to set up regional antennas, spaces in which women can come to discuss contraception, their difficulties ... A way to overcome the closures of many structures Family Planning.

The association has a real legitimacy since we are the only one to have been received by the ANSM. She is thinking of including us in the reading committee of the information medium and to put us in touch with the European referents.

We are not only talking about 20,000 women in a Facebook group, but an association of 300 members.

We try to do serious and ethical work, gynecologists must be aware of it.

As a reminder, we are not at all against contraception, we are not anti-abortion, we are not part of any conspiracy, we do not want to attack Bayer.

We also do not deny the beneficial effects of the IUD on some women, especially those affected by gynecological disorders.

We simply feel that it is not normal to keep a medicine in the body for several years and that we are told that our symptoms are not related to him and that it is put to women without warning them that potentially they could have side effects. It's very problematic. "