The Sexual Health and Well-being of Individuals With Complete Androgen Insensitivity Syndrome (CAIS)

Published information on the sexual health and well-being of individuals with complete androgen insensitivity syndrome (CAIS) remains limited. In this study, we aimed to evaluate the vaginal lengths, sexual well-being and body image findings of a relatively large, young cohort of individuals with CAIS, with the goal of guiding clinical practice toward more accurate and individualized patient-centered counseling.

In this interim analysis of a prospective IRB-approved AIS Natural History Study funded by the National Institutes of Health (NIH), we collected demographic information and vaginal length measurements from 23 individuals with CAIS between 2021 and 2025. Participants over 18 were invited to complete the PROMIS Sexual Function and Satisfaction (PROMIS SexFS) questionnaire and the Body Image Scale (BIS) questionnaire.

The cohort (n = 23) ranged in age from 14 to 65 (median = 19). Fourteen participants (61%) identified as heterosexual, 7 (30%) had undergone complete gonadectomy, and 1 had undergone vaginoplasty. Three participants reported practicing serial vaginal dilations. Vaginal length measurements (n = 14) ranged from 25 to 90mm (median = 60mm). Of those who completed the PROMIS SexFS (n = 11), mean t-scores were within one standard deviation of normalized U.S. female population ranges. Of those who completed the BIS (n = 15), the average mean-item score was 0.9 on a Likert scale from 0 "not at all" to 3 "very much".

Aside from one outlier, vaginal lengths in our cohort did not differ significantly from those reported in the general population, and most participants reported a positive body image and the ability to engage in fulfilling sexual activity.