On the occasion of the European week of prevention and information on endometriosis, the new ENDORA project – or Endometriosis in the Rhône-Alpes region – is unveiled.
Thanks to the mobilization of associations and the media, things are starting to move for women affected by endometriosis. The new ENDORA project – or Endometriosis in the Rhône-Alpes region – aims to develop a prospective database in order to collect as much information as possible concerning the pathology. “It assesses in particular the impact of surgery in patients suffering from deep endometriosis on their quality of life and their fertility”, specifies a press release.
One in ten women is affected
Currently incurable, endometriosis is an inflammatory disease, defined as the presence of endometrial tissue outside the uterine cavity. One in ten women suffer from it, and 70% of them suffer from debilitating chronic pain, preventing them from leading a normal life at the time of their periods, some may also have pain during sexual intercourse and when going to the toilet. However, it still takes an average of seven years for the pathology to be diagnosed, which delays the management of related problems such as infertility (40% of patients encounter this major problem).
“If I had been told that at age 25 the probability of having a child per cycle was 25%, 12% at 35 and 6% at 40, I would have put all the chances of my side, by freezing my oocytes”, thus testifies the singer Laurie, who, like the actress Laëtitia Milot, told in the media of her thwarted desire for pregnancy.
Accurately describe the pathology
The ENDORA project thus aims “to accurately describe the pathology and its diagnostic and therapeutic management”, in order “to identify the factors linked to the deterioration of the quality of life”. Over a period of 5 years, the researchers will collect data on the disease, the risk factors, the diagnosis and the treatment of patients operated on for deep endometriosis, without acting on the medical care.
It is François Golfier, president of the endometriosis commission of the National College of French Gynecologists and Obstetricians (CNGOF), who is leading the project. “We’re fed up with thinking, we have to act”, he declared a short time ago in The Parisian, asking the state for help in setting up expert centers for endometriosis. The goal is to “federate skills. The English have had them for ten years. It would take about thirty in France. The idea is to organize care, provide training, promote better education, develop research But we come up against “political and financial blockages”, he explained.
When first-line treatments fail, the goal of surgery is to remove the lesions of endometriosis while respecting the affected organs.
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