endometriosis, how to manage women

For almost an hour, Lily-Marie will remain leaning against her mother, as if she wants to get some comfort and courage. Just over six months ago, the 14-year-old discovered she had endometriosis. From its first period, its menstrual cycle has been systematically accompanied by headaches, vomiting, “It simply came to our notice thenput »she confides, looking worried.

→ EXPLANATION. Endometriosis: the “endotest”, a promising diagnostic tool

This Thursday, his mother Catherine accompanied him to the Espace Écully, in the inner suburbs of Lyon, for an information meeting on Endomaître, the so-called way of attention. “support”. Being diagnosed so soon is a blessing, “But there is no doubt that she is into drugs, each stronger than the other. said his mother. It is better to tame pain than to hide it! “.

Catherine knows what she’s talking about: At age 45, she’s spent almost half of her life in pain without knowing she had adenomyosis, an internal form of the disease. Her uterus was finally removed.

10% of women of childbearing potential are affected

Like them, some forty hopeful women gather that night to meet the team coordinated by Dr. Benjamin Cotte, a surgeon-gynecologist at the Val d’Ouest private clinic and a pathology specialist. Still poorly understood, endometriosis is defined as the presence, to varying degrees, of tissue similar to the lining of the uterus outside the uterine cavity, which causes fertility problems in four out of ten cases. According to the Ministry of Health, 10% of women of childbearing potential could be affected.

While pills, surgery and other specific treatments are indicated in some cases, few patients manage to overcome chronic pain – pelvic, abdominal, digestive, during intercourse or during bowel movements. These disorders can sometimes be limited to the menstrual period. “But in most cases, they have a strong impact on thehas qualitythe day to day »insists Dr. Cotte, who imagined, in 2018, this complementary care pathway.

For a period of six months, Endomaître offers patients group workshops and individual appointments with professionals working in the physical (exercise, rehabilitation, etc.), psychological (communication, stress, etc.) and chemical (especially nutrition) aspects. of the chiropractor. to the naturopath. The goal? Build a toolbox “For women to better understand the disease and eventually become actors »emphasizes Sylvie Girardot, anesthesiologist nurse and hypnotherapist.

Last resort

Designated as a pilot territory by the national action plan launched in 2019, the Auvergne-Rhône-Alpes region was the first to structure its healthcare sector (End’Aura) to promote care. “multidisciplinary”, which will still be developed as part of the control strategy announced earlier this year. Something obvious for Stephanie, who attended one of Endômaître’s first sessions before becoming its secretary, and observes a request “significant increase” for these alternative programs.

Some women reject the medical solutions they consider “Brutal » On “invasive”, others see it as a last resort when “conventional” treatments have not worked. A dead end is often due to the slowness of the diagnosis – seven years on average, according to the EndoFrance association – which worsens the consequences of the disease and reduces the chances of calming it down.

→ DEBATE. Can the endometriosis plan end the diagnostic error?

This is what 40-year-old Céline has been through and a constellation of ailments dating back to her first period. When he finally received a diagnosis a few years ago, his endometriosis had already reached stage 4, the most serious. While an innovative ultrasound treatment is being considered, the severity of his injuries leaves him with no choice but to resort to surgery at a specialist center in Lyon.

“I don’t even count the number of organs todayI don’t have any more let go of the one who has lost all hope of finding her “before life”. He has a weakened body, can no longer move without a cane, and now has a “disabled” parking card. Due to digestive pains, nausea and extreme fatigue, which are still present despite the medical treatment of the injuries caused by the disease, Céline is accompanied by professionals from the Chambéry hospital: “Without this help, I would have given up. It seems like an endless struggle …”

→ CHRONICLE. Endometriosis, the struggle for visibility

Céline has also joined the Facebook group “Living Better with Endometriosis,” where nearly 20,000 women share tips for identifying the best support. They all point to the same problems: the low effectiveness of most treatments, the difficulty of accessing care close to home or the cost of care, the reimbursement of which requires recognition as ALD 31 (disease long-term). Duration off list). As for alternative programs, this one “It simply came to our notice then »warns Dr. Cotte, who estimates the cost of endometriosis at around € 500 per patient.

A subject that has disappeared from medical studies

In addition to deploying supportive care, “we will have to multiply the expert centers”says Professor François Golfier, Head of the Gynecological-Obstetric Surgery Department at Lyon Sud Hospital and President of the End’Aura Network. Which reminds us that there are other levers of action, starting with the training of leading professionals to reduce diagnostic delays and confusion: “Two years ago, the subject was not taught during medical studies: there is, therefore, an obvious gap in knowledge and listening! », lament the doctor.

→ READ. Endometriosis: the long battle of associations

Last month, 20,000 information leaflets were sent to GPs, pharmacists and nurses in the region.“We start from a long way,” notes Valérie Desplanches, head of the Endometriosis Research Foundation, launched in 2021 in response to a lack of data and figures on the disease. “Because it is feminine and because it touches the taboo of menstruation, this pain has been silenced for too long, recalls the professional, who puts her hopes in the progress of science. Support for these women should now be a priority for research, especially clinical research. »

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An unprecedented disease control plan

Last January, the French government has announced the launch of the first national strategy to combat endometriosis.

Among the problems exposed : improvement of the diagnosis, better care with possible reimbursement when the symptoms are active and tested in the long term, training of health professionals and research for technical and technological innovation.

This one-size-fits-all plan should benefit an endowment of 20 million euros, spread over five years.

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