Assessment of Sexual Health in Mayer–Rokitansky–Küster–Hauser Syndrome: An International Cross-Sectional Survey Utilizing the PROMIS SexFS Questionnaire [ID 4013]

INTRODUCTION: Individuals with Mayer–Rokitansky–Küster–Hauser (MRKH) syndrome have an underdevelopment of the uterus and upper vagina. Typically, there is a shortened vaginal length, and some opt for vaginal lengthening. Little data has compared sexual function in MRKH compared to the general population. METHODS: Individuals were asked about surgery, dilation, and sexual health. Inclusion criteria included age older than 18 years and a diagnosis of MRKH. The National Institutes of Health’s validated PROMIS Sexual Health and Function (SexFS) v2.0 was used to assess sexual function in the last 30 days. The survey was administered via a patient advocacy group. T-scores from SexFS were calculated with a mean of 50 compared to the average sexually active female in the United States. This study was IRB approved. RESULTS: n=164 individuals were sexually active in the last 30 days and filled out the sexual health component of the survey. T-scores with 95% CIs for each PROMIS SexFS domain were as follows: 1) Clitoris 51.6 (36.7–66.6), 2) Satisfaction 49.1 (43.4–54.8), 3) Labial 52.1 (39–65.3), 4) Lubrication 47.3 (38.6–56), 5) Orgasm 47.7 (39.5–55.9), and 6) Vaginal 55.8 (48.9–62.8). There were no differences between the six domains or between those who had undergone vaginoplasty ( P >.05). CONCLUSIONS/IMPLICATIONS: Individuals with MRKH who are sexually active have similar sexual health outcomes compared to the general U.S. population. Although most individuals with MRKH have shorter vaginal lengths and some undergo vaginal surgery, there were no significant differences among those who were sexually active. Limitations include selection bias and only assessing sexual function among currently sexually active individuals.