Although affecting more than one in ten women, endometriosis has long been a misdiagnosed disease. Today better known to the medical profession and better taken care of, in particular thanks to the mobilization of associations, it is the subject of several researches and treatments.
- Although better known to the general public and the medical profession, endometriosis remains misdiagnosed today, which exposes women who suffer from it to diagnostic wandering for an average of seven years.
- Misdiagnosed, endometriosis also suffers from a lack of curative treatment. Women who suffer from it have few treatment options, and these are often invasive and painful.
- Patient associations are now pleading for better recognition of the disease, as well as for a multidisciplinary approach to better manage it.
Affecting nearly one in ten women of childbearing age, endometriosis has long remained a misdiagnosed disease, as it is unknown to the medical world.
In women who suffer from it, the endometrium, the tissue that lines the uterus, grows outside the uterus and can reach the fallopian tubes, the ovaries, and extend to the urinary and digestive tracts . However, at each period of menstruation, if there has been no fertilization, this innervated and vascularized tissue disintegrates, which leads to violent gynecological pain. Many women with endometriosis also have difficulty conceiving a child. In 25 to 50% of cases, the disease leads to infertility.
Once identified, the disease can be relieved by painkillers or hormonal treatments and, in the most severe cases, by surgery. The problem is that this disease has long been ignored by the medical profession. It takes an average of seven years for patients to receive the diagnosis, exposing them during this time to terrible pain during menstruation and sexual intercourse.
Diagnosis always too late
But, since 2016 and the first national information and awareness campaign on endometriosis, things are starting to change, in particular thanks to the mobilization of patient associations. “More and more general practitioners, gynecologists, nurses and midwives are trained to recognize this disease, explain to Science and Future Dr. Isabella Chanavaz-Lacheray, specialized in the treatment of endometriosis. Nevertheless, the first warning sign, which is incapacitating pain during menstruation, is still little considered by patients and doctors alike.
A point of view shared by the collective A Nos Corps Résistants (ANCRés), which regrets that the diagnosis remains “Still very long if we don’t come across trained people. And there is still just as much delay for appointments with specialists, whether for an MRI or an ultrasound.”
Treatments still too limited
For the time being, no curative treatment for endometriosis exists and the therapeutic prospects remain limited. The majority of women are prescribed first-line contraceptive pills, which prevent menstrual pain. “In terms of treatment, there is still nothing miraculous, regrets the ANCRéS collective, the pill is still advocated as the miracle solution because endometriosis is associated with period pain. Most doctors believe that if there are no periods, there is no pain. Some even advise having a child to heal!”
The other option is surgery, to remove the lesions and make the symptoms disappear for a certain period. To make it less invasive and painful, certain structures are equipped. This is the case of the Kenval-Kennedy clinic in Nîmes which, since 2019, has been using a new machine, the PlasmaJet®, to reduce the risk of reaching healthy tissue. The operation takes the form of a laparoscopy and lasts less time than the “classic” intervention for endometriosis.
“Contrary to what one might think, there is more and more research on endometriosis. Nevertheless, there is a lot of basic research in progress, which, for the moment, does not lead to concrete things. “regrets Dr. Chanavaz-Lacheray.
Towards a multidisciplinary approach to endometriosis
A better understanding and management of endometriosis will also mean better training for medical teams. In 2019, a working group from the Society for Women’s Health Research published in theAmerican Journal of Obstetrics and Gynecology an article on the avenues to be explored to improve the diagnosis, treatment and access of women suffering from endometriosis to quality care. According to the authors, it is essential to guide future treatment and care “towards a multidisciplinary approach centered on the patient and focusing on him as a whole, rather than on a single symptom at a time”.
Currently, treatments indeed focus on suppressing or eliminating endometrial lesions in hopes of eliminating pain and/or infertility, although the relationship between lesions and these symptoms is not well understood. . However, these therapies are not effective in all women and cannot be used in those who are trying to get pregnant.
In France, this multidisciplinary approach is recommended by the National College of Gynecologists and Obstetricians (CNGOF), which wishes to create regional expert centers for endometriosis. Their objective will be to train practitioners, develop research and set up early management of the disease.
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