“I have been complaining for twenty years of widespread stomach pains the week before my period and around the time of my period. In the midst of a crisis, I have to lie down for hours on end. But as things then calm down and I’m in good shape overall, my gynecologist has never taken my problems very seriously ”. That was before Axelle, 42, urgently consulted her GP for unbearable pain in the lower abdomen. After an ultrasound and then a pelvic MRI in order to continue the investigations, the verdict is: Axelle has endometriosis, a disease caused by the migration of endometrial cells, which lines the uterus, out of the uterus.
These are attached to other organs such as the ovaries, rectum, bladder or diaphragm and remain sensitive to hormonal variations during the cycle. This is the first stage of (superficial) endometriosis, which cannot yet be seen on imaging. These cells can then form nodules or cysts: this is called deep endometriosis, visible on imaging. The disease would affect nearly two million women in France.
Stop periods as soon as possible
If it is not a fatal pathology, endometriosis can nevertheless “rot” the lives of the women concerned due to severe pain during menstruation, sexual relations, defecation … According to the association Endomind, 80% of patients feel a limitation in their daily tasks and 40% experience fertility problems. The causes of this pathology, which can manifest itself as early as puberty, remain mysterious and the diagnosis is often made late, because too many women and doctors continue to consider that it is normal to suffer during the rules. However, if it is not taken care of, the disease progresses: the lesions multiply and spread, which can then prevent any hope of pregnancy.
Today, when the diagnosis has been made, the first treatment consists of blocking the rules, and therefore causing amenorrhea. The girl is prescribed continuous oral contraception as early as possible (combined pill). “We thus hope to avoid serious forms with painful nodules located between the uterus and the bladder or the bladder and the intestines… which will then have to be operated on. », Explains Dr Emilie Faller, gynecologist at the endometriosis expert center at Strasbourg University Hospital.
The first prescription is not always effective and it is sometimes necessary to test several contraceptives to obtain a satisfactory result while taking into account any side effects and contraindications. In addition, acupuncture, osteopathy or yoga can help improve the quality of life of women.
A specific drug instead of the pill
If estrogen-progestogen therapy fails, the gynecologist may suggest a levonorgestrel intrauterine device (IUD) or an antiandrogenic progestogen (dienogest). At the rate of one tablet per day continuously, this molecule makes it possible to put the patients in amenorrhea. “Available in France for ten years, it is the only drug exclusively intended for the treatment of endometriosis. But, until now non-refundable, its price was an obstacle to its prescription ”, emphasizes Dr Isabella Chanavaz-Lacheray, obstetrician gynecologist specializing in endometriosis.
Good news: since April 2020, the three products that contain this molecule are reimbursed at 65% by Health Insurance, which allows them to be prescribed more widely. “In 90% of cases, the results are very satisfactory”. As for artificial menopause (caused by drugs), more radical than contraception to put the ovaries at rest, it is only recommended as a last resort, and temporarily, because of its side effects: hot flashes , risk of osteoporosis … “Now, it is associated with hormone replacement therapy to avoid all its inconvenience”, indicates the gynecologist.
Two new techniques to preserve fertility
Sometimes the surgeon has to work on an ovary to remove a cyst, a procedure that is usually done by laparoscopy (small incisions of a few centimeters). “But the classic cystectomy technique (emptying the cyst, then removing its shell) risks tearing from the healthy ovary containing future eggs and thus reducing the woman’s chances of pregnancy at a later date”, informs Dr Chanavaz-Lacheray. Less invasive surgical techniques have been developing for several years with the objective of destroying the shell of the cyst in place to preserve the healthy ovary.
Thus, alcoholization, under laparoscopy or by natural means, consists in emptying the cyst of its liquid contents (by suction), then in injecting alcohol into it. After about ten minutes, the alcohol burned the inner walls of the cyst without the ovary being touched. As for the PlasmaJet, it allows, under laparoscopy, to deliver a jet of pure plasma inside the cyst. This gas precisely destroys the thickness of the inner shell (1 mm) without reaching the ovary. In both cases, the intervention is systematically associated with long-term medical treatment to suppress the rules and therefore prevent any recurrence.
Ultrasound to relieve intestinal complications
Of the many organs that can be affected by endometriosis, the rectum (the last six inches of the intestine) is affected in about 20% of cases. Nodules (1 to 3 cm) form on the intestines, causing painful and crippling cramps and diarrhea. If hormonal treatment and amenorrhea are not enough to regress the nodule (s), an operation is required. Traditionally, this intervention lasts several hours, requires between three and ten days of hospitalization and around a month of sick leave. “It also carries the risk of fistula (communication between the vagina and the intestine) or even causes the urge to have a bowel movement in the event of resection of the rectum”, explains Prof. Gil Dubernard, head of the obstetric gynecology department at the CroixRousse hospital, in Lyon. D
‘where the idea of destroying the lesion with high intensity focused ultrasound waves (UFHI), in order to avoid any ablation and related side effects. These ultrasounds, which cause a heat of 85 ° C, are already used to destroy kidney stones (lithotripsy) or certain tumors of the prostate or liver without damaging the surrounding tissues. A first study led by Prof. Dubernard showed real pain relief, “But also a reduction in the duration of the intervention, reduced to 1.5 hours, without incision. Hospitalization is also shortened – we come out the next day – and convalescence quicker, to eight days ”, assures the doctor.
To confirm these encouraging results, Professor Dubernard and his team have started a new experiment on a larger number of women with larger doses of ultrasound waves. “At the moment we are getting a decrease in pain by destroying the nerves and vessels that supplied the nodule, but now we would like to achieve a decrease in the size of the lesion”.
Less diagnostic wandering
It takes an average of eight years for endometriosis to be diagnosed. Long years of suffering, incomprehension, unnecessary examinations, unsuitable consultations … In this context, the launch of the site endo.ziwig.com constitutes a real accelerator of support.
How? ‘Or’ What ? Each woman whose symptoms suggest the disease can create her personal account free of charge. She then answers a questionnaire that assesses the risk. If the latter is confirmed, she completes a second more detailed interview. Its data, analyzed using artificial intelligence, make it possible to develop a summary sheet and direct it to the appropriate health professional.
A noter : EndoZiwig was developed by an independent Lyon SME, in partnership with the SCGP (Society for Gynecological and Pelvic Surgery).
Testimonial: Sport as an analgesic
It was while participating for the first time in a charity run that Cécile Douillard * noticed that her pain was reduced by the effort. “I had suffered from endometriosis for about twenty years now and neither the drug treatments nor the five surgeries I had undergone had given me lasting relief. So I decided to start running, then I started swimming, Pilates, yoga, walking ”.
And the results are there : “I still have very aggressive endometriosis, but thanks to sport, I now lead an almost normal life,” she says. The sport practiced regularly relieves me physically and helps me psychologically ”. No doubt due to the release of “doping” hormones such as endorphin and dopamine. According to some studies, physical activity also contributes to reduce the level of estrogen in the body and, therefore, inflammation, and therefore pain.
* Founder of the association endOF, which encourages people with chronic pain to be active. More info on endof.org (site in English).
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