Like stabs in the hips, legs, back, rectum, vagina. Unimaginable pain, to the point of no longer being able to move, walk, or even sit still. Recurrent urinary infections. No more sport, no more intimate life, no more life. Eroded urethras, perforated bladders, damaged muscles. Years of wandering, examinations and useless operations, facing denial from the medical profession. On their Facebook groups, women mutilated by implants against urinary incontinence and prolapse recount their suffering. Numerous, poignant testimonies for a scandal whose scale we have not yet finished measuring.
Added to this tragedy is another: the difficulty for victims in obtaining appropriate care. The long, narrow polypropylene meshes implanted to support their organs were not designed to be removed. Even once the origin of their ailments has been identified, the vast majority of French surgeons therefore hesitate to reoperate on patients. And even more so to completely remove the famous strip, as the procedure turns out to be delicate. Affected women often don’t know where to turn. To the point that some cross the Atlantic and spend fortunes to finally be “liberated” from the system. A case which once again illustrates the opacity of our health system, but also the difficulty in regulating the activity of doctors. Because the settlements continue at a sustained pace, even though the risks are now well known.
Under pressure from victims’ associations, some specialists are trying, not without difficulty, to help patients and bring order to practices. But the most difficult thing remains to be done: regain the trust of these women who have been poorly treated and wounded deep within their flesh. Their precise number is not known. Since their invention a little less than three decades ago, these strips have been used in spades. “In France alone, 700,000 women are carriers,” estimates Professor Xavier Gamé, former secretary general of the French Urology Association (AFU). A decline in organs, leaks during exercise, even minimal, and gynecologists and urologists advised them – still advise them – to their patients. Still too often without informing them of the risks, and without having tried an alternative solution.
A French study (Vigimesh) published in 2023 reports nearly 3% of complications requiring reoperation up to two years after installation. That’s around 21,000 women affected. A figure that is largely underestimated, according to the associations: it does not include patients who did not benefit from a reoperation despite their suffering, nor those whose difficulties began several years after implantation.
A heavy bill
Example among others, Anne-Laure Castelli, today spokesperson for the Collective “Balance ta bandette”, wandered for seven years, from pain experts to urologists, before discovering a French Facebook group supporting victims of the strips. An illumination. “I read all the testimonies, I cried. Until then, all the doctors I consulted told me that my implant was not to blame,” she says. She then tried to have another operation, in vain. “At best, I was offered to cut the strip. But to remove it, I was told that it was impossible,” she remembers.
She then turned to an American surgeon, Dr. Dionysios Veronikis, whose name is circulating on Facebook groups, in France and abroad. This gynecologist specializes in the removal of vaginal implants. He benefits from an excellent reputation on the networks and has even signed an agreement with the Scottish health system, which covers the costs linked to his interventions. For all other women, and particularly French women, the bill is heavy. Around $15,000 minimum, sometimes much more, for the operation itself and one or two days of hospitalization. A Quebecer, Cynthia Gagne, herself operated on by this surgeon, offers to accompany and accommodate the women on site, in small groups, for around ten days after the operation, until they are able to travel again. A service that she charges nearly $6,000 per person, flight not included.
After raising the money with the help of her family, Anne-Laure Castelli underwent surgery in February 2023. Since then, the pain has slowly subsided, but she still needs a cushion to sit on. Forty-two French women have already made the trip to the United States, and many, on Facebook, say they are satisfied with the result. Annabelle Netto preferred to be treated in France: “On the Facebook group, there is only one for this Dr Veronikis. We have the impression that he is the only one who can take care of us”, laments she, outraged by the prices requested. Operated in October, she is recovering slowly and is fighting so that women know that there are also surgeons in France capable of helping them. Tired of war, she even ended up creating a new Facebook groupto “escape the pressures” of women who defend the American solution.
The fact remains that in France, surgeons capable of reoperating on victims are few in number, and poorly identified by their colleagues and patients. “Under the cover of brotherhood and the ban on advertising, doctors cannot communicate about their skills,” regrets Dr. Benoit Peyronnet. This urologist at Rennes University Hospital knows something about it: after having given in the press the name of a few specialists capable of removing these strips, he was attacked before the order of doctors. “Unfortunately, the result is there: the care is not good in our country, because the ladies do not reach the competent centers,” he notes.
Ongoing reforms
However, this could soon change. After months of discussions, representatives of urologists, gynecologists and perineum specialists have, according to our information, agreed on the creation of “expert centers” for the treatment of complications. The precise number remains to be determined, but the Ministry of Health is expected to publish the official list by the end of the year. Sufficient ? Some of the victims doubt it. “I was operated on by a French surgeon who knows our complications well. He told me that the strip had been completely removed, although the removal was only partial,” indicates Marie-Christine Siodeau by email. At the origin of the collective of French patients, this woman, who has since been operated on in the United States, assures that she is not the only one in this case.
Now suspicious of the medical profession, some of the victims are demanding tangible proof of the surgeons’ skills. “In the United States, Dr Veronikis provides photos of what he removes. Some French experts have promised us to do the same thing, but we are still waiting,” regrets Anne-Laure Castelli. A caution that can be understood, as these women were mishandled by caregivers. Many also note how difficult the regulations supposed to govern the placement of implants are to enforce.
After the scandal broke in 2017, measures were taken to restrict its use. In October 2020 and September 2021, two decrees set requirements for training in the technique and regular practice, as well as the obligation to hold a multidisciplinary consultation meeting [NDLR: entre différents spécialistes] before any intervention. And, of course, the need to provide written information to patients on the benefits and risks of the devices.
In reality, the implementation of these measures proves to be variable to say the least. “Among the members of our group implanted since 2020, only 4% have received this information,” reports Florence Candas, from the Collectif Bandelettes perineales France. A investigation conducted by a group of experts among 436 French surgeons also showed that 47% of them placed fewer than 15 implants per year, a volume considered insufficient, and that 45% of centers did not organize a consultation meeting multidisciplinary… Worse still, 70% of interns are not well trained in this procedure. “It’s like with the highway code,” sighs Professor Gamé. “The colleagues are informed of the rules, but the authorities cannot be behind everyone.”
New rules could, however, soon be enacted when the 2020 and 2021 decrees are updated. “This would involve reinforcing the obligation of continuing training, but also imposing participation in a register [NDLR : où tous les actes sont consignés au niveau national]the declaration of complications and the referral of patients to expert centers in the event of a problem”, summarizes Michel Cosson, gynecologist at Lille University Hospital and president of the pelvi-perineology commission of the College of obstetrician gynecologists. The specialists would also like to limit drastically the installation of the most difficult model of strips to remove, which still represents half of the implants placed today.
Victims’ groups are asking for more. The creation of a limited number of expert centers for installation, and not just for removal. Guarantees on the training of surgeons. From research into the material used for implants, many women worry about also developing inflammatory diseases (endometriosis, etc.). And reimbursement for explants carried out in the United States. Representatives of French surgeons, for their part, argue that, in a third of cases, removal is not enough to eliminate the pain. And that in these conditions, women would have every interest in being taken care of in France, in specialized centers, capable of supporting them over the long term, with appropriate follow-up. In view of the current situation, however, they will need more than words to convince. But if the announced reforms come to fruition, victims will at least have access to an informed choice.
.