ABSTRACT Introduction Lichen sclerosus (LS) is a chronic, inflammatory skin condition that primarily affects the anogenital epithelium in women. Vulvar LS has historically been regarded as a condition of premenarchal girls and postmenopausal women, overlooking women of reproductive age. Although vulvar LS characteristically presents with pruritis, specialists in LS have clinically observed that premenopausal women often present with dyspareunia related to introital tearing and vulvar skin changes. Objective This study aims to characterize the clinical presentation of vulvar LS among premenopausal women related to sexual pain. Methods A cross-sectional web-based study was conducted in premenopausal women with biopsy-confirmed vulvar LS between the ages of 18-50 years. Participants completed a 28-question survey evaluating characteristics of symptoms, as well as timing and accuracy of diagnosis. Numerical data were expressed as mean +/- standard deviation. Bivariate Pearson correlation was used to determine the relationship between age of symptom onset and time interval to diagnosis. Results Of the 956 responses received, 503 met inclusion criteria of biopsy confirmed LS and premenopausal status. Self-reported ethnicity of the study population was 87% White, 4% Latina or Hispanic, 2% Asian, and 1% Black. The mean age of the population was 37 years, ranging from 19-50 years. There was a 4-year delay in diagnosis, with an average age of symptom onset of 27 years and average age of diagnosis of 32 years. There was an inverse correlation between the age at which symptoms began and the time interval to diagnosis with a Pearson correlation coefficient of -0.487 (t(455)=14.184, p<.0001). Most prevalent symptoms were dyspareunia (68%), tearing with intercourse or vaginal insertion (63%), and decreased clitoral sensation (35%). Symptoms reported as most affecting the individual were dyspareunia (44%), tearing with intercourse or vaginal insertion (39%) and pruritis (25%), followed by decreased clitoral sensation (13%). Symptoms that most frequently prompted patients to seek medical attention were dyspareunia (35%), pruritus (31%), and tearing with intercourse or vaginal insertion (26%). Only 4% of respondents reported that decreased clitoral sensation prompted medical attention. Most prevalent skin changes included hypopigmentation (81%), vulvar fissures (72%), labial resorption (60%), clitoral phimosis (39%), and vaginal stenosis (37%), with vulvar fissures affecting the individual the most (48%) and prompting medical attention (39%). Sixty-six percent of respondents initially received an alternative diagnosis, most commonly vulvovaginal yeast infection (49%). Conclusions Vulvar LS affects premenopausal women and often causes skin changes related to sexual function. This condition is often misdiagnosed as vulvovaginal candidiasis, leading to a delay in diagnosis of 4 years, which is consistent with existing literature. LS symptoms in premenopausal women related to sexual function and pain include dyspareunia, tearing with intercourse or vaginal insertion, and decreased clitoral sensation. These symptoms may be more concerning to premenopausal women, who are more likely to be sexually active, than the classic symptoms of vulvar pruritis found predominantly in postmenopausal women. Vulvar LS should be considered and evaluated in women of all ages presenting with vulvar symptoms and sexual pain. Disclosure Any of the authors act as a consultant, employee or shareholder of an industry for: Consultant for Good Clean Love and Mahana Therapeutics; Part-time employee of Dare Bioscience, has received research funding from Dare Science, SST, Endoceutics, The Cellular Medicine Association, and Ipsen for other projects, and is a consultant for Ipsen, SST, and AMAG
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