Practice Gaps “Down There”: Failures in Education, Physical Examination, Recognition, Diagnosis, Therapy, Follow-up Care, and Cancer Surveillance in Lichen Sclerosus

Although lichen sclerosus (LS) in the vagina is rare,1 this vulvar conditionaffects 1% to 3%ofwomen. In this issueof JAMA Dermatology, Zendell and Edwards2 report 2 new cases of LS. Although most patients are perimenopausal or postmenopausal, children are not spared. Because it is usually asymptomatic, patients are seen with advanced disease, having flattened labia minora, narrowed introitus, a scarreddown clitoris, and sexual dysfunction. This can occur as early as age 20 years, and therapy at this advanced stage is problematic. The “lucky” ones develop symptoms early and seekhelp. With topical superpotent corticosteroidointment (not cream), the early disease can be rolled back, and even themost symptomatic can improve. Lichen sclerosus is chronic, recurrent, and prone to fadingoutof theeverydayconsciousnessof thosewhohave it and those who care for it. Detection is important, therapy started early is effective, and follow-upmonitoring is essential. Practice gaps in these 3 areas are evident daily in our clinics. Symptomaticpatients report itching, burning, soreness, or pain. Toooften, the irritation is ascribed to “yeast” and is selftreated with partial success using over-the-counter topical medications. Almost never do women cite asymptomatic whitenessof thevulva, themostcommonphysical finding.Cultural taboos limit examination by the patient and by her caregivers. In a world in which many women never look at their own vulvas, this is understandable. But, symptoms or not, somebody shouldperformanannual vulvar examination.Unfortunately, evenwith regular Papanicolaou smears, patients withobviousLSaremissed.Foryears,mylectureshavepointed out that “the vulva is like a small town—everybody passes through, but nobody stops to look.” The other half of the detection gap is that many examiners do not recognize normal vulvar anatomy. In medical and nursing schools and in residency programs, normal vulvar anatomy and vulvar disease should be taught. It may be possible to patch up thismonstrous training gap by developing a video application to teach women about this problem and to convey the basics of self-examination. The therapy gap is also a major concern, with physicians using outmoded testosterone ointment or ineffective lowdose cortisone creams. Long-term superpotent topical corticosteroid ointments are appropriate. ManypatientshavehadLSundetected for decades. These women are seen with advanced disease, often accompanied by significant comorbidities (overactive bladder, urinary incontinence, thyroid dysfunction, and vulvar pain). The follow-up gap, an easy trap in an asymptomatic disease, ismoreworrisome.The threat here is squamous cell carcinoma. Yearly cervical cancer screening used to be the sole effective stimulus to look “down there.” Cessation of regular Papanicolaou smears at age 65 years means that womenwho reach the Papanicolaou-free years will often miss their annual opportunity to have asymptomatic LS and cancer discovered.3 Althoughnobodydies of LS,wewhoworkdown there are findingmoreof these easily palpable tumors, requiring extensive and often destructive surgery. Patients could readily detect themmuch earlier with a simple soapy finger. Unfortunately, thesemalignantneoplasmsaremissedbecause nobody looks andwomen do not examine the area.We dermatologistsneedto look, learn,andteachself-examination.