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I've been coming to the realization after 18 months of treatment that the only treatment our dermatologists and gynaegologists can offer (ultrapotent topical steroids) stop inflammation and open wounds, but they do not stop the forward march of disfigurement in my case. The hardening and tightening of a ring around my vaginal introitus continues. I think after menopause the prognosis is much worse. This review doesn't seem to address this, unless somebody's a better reader of this stuff than I am.
I found this review in the American Journal of Clinical Dermatology, of all studies as of 2012: "Diagnosis and Treatment of Lichen Sclerosus: An Update". Pretty good news for those with early diagnosis who stick with the clobetasol.
"In a descriptive cohort study with a mean follow-up of 66 months, 327 patients (74 girls and 253 women) with vulvar LS have been treated with topical corticosteroids. Clinical signs improved in nearly all patients, but only 22 % of the girls and 23 % of the women showed complete resolution of clinical signs with return to normal skin texture and color. The concept that prepubertal LS resolves at puberty appears not to be true in the majority of patients. Seventy-five percent of girls who develop LS prior to puberty will continue to require maintenance therapy after menarche.
There is a significant risk for women with vulvar LS to develop scarring with loss of vulvar architecture and normal function. Cooper et al. showed in their study of 327 women that a delay in diagnosis of 2 years or less was associated with less scarring at diagnosis. In a second long-term study (mean follow-up 6.2 years), the authors compared the data of 84 fully compliant women with 45 partly compliant women with vulvar LS. Ninety-eight percent of the fully compliant patients achieved complete symptom control, including ability to resume sexual activity without pain. None had disease progression. In partially compliant patients, only 75 % achieved complete symptom control and 35 % experienced progression of disease with scarring and fusion."
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