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Adult Patients’ Quality of Life, Sexuality Impacted by Childhood Vulvar Lichen Sclerosus Diagnoses


Quality of life and sexuality were somewhat affected in 51.9% of adults who had been diagnosed with vulvar lichen sclerosus in childhood or adolescence.

In a cohort of adult females who had received a histologically-confirmed diagnosis of vulvar lichen sclerosus (VLS) in childhood or adolescence, more than half (51.9%) reported long-term lasting impacts to their overall quality of life and sexuality, according to a study1 published in the Acta Obstetricia et Gynecologica Scandinavia.

David A. Litman/Adobe Stock
David A. Litman/Adobe Stock

According to investigators Morrel et al, VLS occurs in around 1 in 900 young females and is commonly diagnosed in pre-puberty. Despite this, they note that there is limited research exploring the extent of the condition’s impacts into adulthood.

Investigators identified all histological data regarding vulvar biopsies classified as lichen sclerosus from the Dutch Nationwide Pathology Databank. Biopsies had been collected from juvenile female patients between 1991 and 2015. Investigators then requested tissue samples from pathology laboratories in the Netherlands. All biopsies were reviewed a team of pathologists, a gynecopathologist, and a dermatopathologist, excluding inconclusive biopsies, poor tissue samples, and samples featuring concomitant lesions.

Key Takeaways

  • The study explored the long-term consequences of VLS, a condition that occurs in about 1 in 900 young females, into adulthood.
  • Over half (51.9%) of adult females who had vulvar lichen sclerosus (VLS) in childhood or adolescence reported lasting impacts on quality of life and sexuality.
  • Despite the current advice for surveillance and treatment, more than half of the participants were not under surveillance, highlighting the need for improved care and counseling for these patients.

Once determining that samples belonged to patients who were 18 years or older as of January 1, 2021, investigators went through the process of identifying the patients associated with the samples and acquiring informed consent.

Participants (n=81) were then asked to complete an online questionnaire, including questions specific to the Dermatology Life Quality Index (DLQI), Skindex-29, Female Sexual Function Index (FSFI), and Female Sexual Distress Scale-Revised (FSDS-R), of which 80 participants completed all 5 parts. Participants also answered questions relative to their past and present experiences with VLS.

According to the results of the questionnaire, 51.9% of respondents reported VLS having some degree of impact on their overall quality of life, with 6.2% reporting a large quality of life impact in accordance with the DLQI. Skindex-29 responses revealed that VLS had impacted the quality of life of 30.9% of respondents, with 9.9% having a severe impact. Of the respondents, more than half reported sexual dysfunction (51.9%) and sexual distress (53.7%).

Respondents were then able to respond openly about their experiences with VLS. One respondent wrote that, “The diagnosis was made when I was a teenager, at an age when you want to go out and discover the world, just like one's peers. The lichen sclerosus always held me back.” Respondents also reported frequent urinary tract infections, pain during intercourse, concerns about risks of developing vulvar cancer, concerns about whether delivery of a child would be impacted by the condition, and dissatisfaction with their appearance.

“Despite the current advice that females of any age with VLS should be offered surveillance and maintenance treatment, more than half (54%) of the participants were not under surveillance,” according to study authors Morrel et al. “The impact on QoL [quality of life] and sexual well-being in this relatively young study group, as assessed by available instruments, seems to be more favorable then previously reported for VLS but correlates strongly with current symptoms. Over half of the participants had suffered from symptoms within the past year.... This study is hopefully a starting point for further research on this topic, the ultimate goal being to improve care and counseling of these young patients from time of diagnosis onwards.”


  1. Morrel B, van der Avoort IA, Ewing‐Graham PC, et al. Long‐term consequences of juvenile vulvar lichen sclerosus: a cohort study of adults with a histologically confirmed diagnosis in childhood or adolescence. Acta Obstet Gynecol Scand. Published online August 26, 2023. doi:10.1111/aogs.14668
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