Venus on edge: this is the pretty name of an association which supports women suffering from atrophic lichen sclerosus, a little-known chronic skin disease which affects the genital and anal sphere. Laëtitia Giraudon is the president of this association which is organizing an information day for patients and their loved ones, on September 16 in Toulon (1). A soldier, herself affected by this pathology since childhood, she trained at the medical faculty of Marseille and obtained a university certificate in therapeutic education, then a DU (university diploma) in chronic illness. An expert patient, she lifts the veil on a still taboo disease.
What is atrophic lichen sclerosus (2)?
It is a chronic autoimmune disease of the skin, which affects the genital and vulvar region. Of unknown cause, it is characterized by phases of inflammation and remission. Both men and women can be affected at any age, but it is more common in women and girls. It often occurs following shock, trauma, stress… The disease is not rare but it is little known, it is difficult to quantify its incidence. Diagnoses often take a very long time and sometimes come following years of medical wandering and suffering. This phase of uncertainty is often the most difficult and tiring. Being able to reduce it as much as possible with a rapid diagnosis is of fundamental importance and therefore pediatricians, dermatologists, gynecologists and urologists must be aware.
What are the associated symptoms?
Lichen sclerosus can be responsible for intense vulvar and/or anal itching and inflammation of the vulva or anus that is intensified during menstruation. It can cause urinary burning with painful urination and constipation. It sometimes causes burial of the clitoris, atrophy of the vulva, pearly white sclerotic plaques at the periphery of the vulva and perineum up to the anus, vaginal and vulvar dryness, bleeding, fusion of the labia minora. in the large ones, cracks at the fork (the junction) of the labia minora, narrowing of the vaginal opening. Sex can be painful or even impossible. But patients with lichen sclerosus may have only some or none of these symptoms.
In terms of pain?
This disease can cause many other pains: pain when walking or sitting, hypertonia of the perineum, that is to say a contracture of the muscles of the pelvic floor or vaginismus, an involuntary contraction of the muscles of the vagina, around the pubis and the anus which can prevent any intromission whether it is the penis, the speculum during a gynecological examination, a tampon, a menstrual cup. It can also cause persistent vulvar pain (vulvodynia), with sensitivity and pain throughout the vulva without apparent cause, or vestibulodynia: sensitivity and pain are localized at the entrance to the vagina. Sometimes it is litorodynia, persistent pain in the clitoris or dyspareunia, pain during or following sexual intercourse. Neuropathic pain is also possible.
Finally, lichen sclerosus lesions can degenerate into cancerous lesions, which is why regular monitoring and continuity of treatment are important even if vulvar cancer remains rare.
What regarding the impact on quality of life?
Depression is one of the possible consequences, so psychological monitoring is very important. This disease concerns the intimate sphere, sexuality. It’s complicated to live as a couple. This is why it is interesting for spouses to participate in the information day. Often there is a feeling of shame, the illness still remains taboo. Worse, the lesions can be confused with the following-effects of sexual abuse. Many doctors have asked me this question. It’s very hard to hear. Psychological monitoring is all the more important.
What treatment?
There is no treatment for the disease itself. The goal is to reduce the stages of inflammation as much as possible. It is therefore essential to carry out regular checks by a specialist, to follow prescribed drug therapies precisely, to use emollient creams to properly moisturize the vulva, to maintain good intimate hygiene and to avoid irritating the skin. . Corticosteroids, the only reimbursed treatments, are not sufficient to improve quality of life but there are many solutions that you need to learn regarding: creams, laser, radiofrequency, oxygen therapy device associated with hyaluronic acid, etc.
An advice?
Monitor any changes in the skin or anatomical structure, possibly using a hand mirror. And learn to listen to your body, the signals it sends. To consult without delay whenever necessary.
1. Salle Mozart, 166 boulevard du Maréchal Leclerc in Toulon, from 8:30 a.m. to 6 p.m.
2. It is also called vulvar kraurosis or vulvar lichen.
