Sexual Health

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

TL;DR

Most individuals with CAIS reported positive body image and the ability to engage in fulfilling sexual activity, with vaginal lengths largely comparable to the general population.

Key Findings

Vaginal lengths in individuals with CAIS were largely comparable to those reported in the general population.

  • Vaginal length measurements were collected from 14 of 23 participants.
  • Measurements ranged from 25 to 90mm with a median of 60mm.
  • Aside from one outlier, vaginal lengths did not differ significantly from those reported in the general population.
  • Only 3 participants reported practicing serial vaginal dilations, and 1 had undergone vaginoplasty.

Sexual function and satisfaction scores in CAIS individuals were within normal ranges for the U.S. female population.

  • 11 of 23 participants completed the PROMIS Sexual Function and Satisfaction (PROMIS SexFS) questionnaire.
  • Mean t-scores were within one standard deviation of normalized U.S. female population ranges.
  • The cohort ranged in age from 14 to 65 with a median age of 19.
  • 14 participants (61%) identified as heterosexual.

Most individuals with CAIS reported a positive body image.

  • 15 of 23 participants completed the Body Image Scale (BIS) questionnaire.
  • The average mean-item score was 0.9 on a Likert scale from 0 ('not at all') to 3 ('very much'), indicating low body image distress.
  • The study used the Body Image Scale (BIS) as the measurement instrument.

The study cohort of CAIS individuals was relatively young and diverse in gonadectomy status.

  • The cohort included 23 participants ranging in age from 14 to 65, with a median age of 19.
  • 7 participants (30%) had undergone complete gonadectomy.
  • 14 participants (61%) identified as heterosexual.
  • Data were collected between 2021 and 2025 as part of an NIH-funded prospective AIS Natural History Study.

What This Means

This research suggests that people with complete androgen insensitivity syndrome (CAIS) — a condition where a person is genetically male but is resistant to androgens (male hormones) and typically develops a female appearance — generally have positive sexual health outcomes and body image. The study followed 23 individuals with CAIS, ranging in age from 14 to 65, and found that their vaginal lengths were mostly similar to those seen in the general population, that their sexual function and satisfaction scores fell within normal ranges for U.S. women, and that they reported relatively low levels of body image distress. Notably, most participants did not require interventions such as vaginal dilation or surgery to achieve these outcomes, which has historically been a concern in clinical care for people with CAIS. Only 3 participants were using serial vaginal dilations and 1 had undergone vaginoplasty, suggesting that many individuals with CAIS may not need these procedures to achieve satisfactory vaginal function. This research matters because clinical guidance for people with CAIS has often been based on limited data, and assumptions about poor sexual outcomes may have led to unnecessary medical interventions or overly negative counseling. These findings suggest that clinicians should approach counseling for individuals with CAIS in a more individualized and optimistic way, recognizing that many patients can achieve positive sexual well-being and body image without extensive medical intervention. The study is ongoing (an interim analysis), so future results with a larger sample may provide even more detailed insights.

Have a question about this study?

Citation

Lehembre-Shiah E, Adams M, Soliman M, Kaur H, Brookhart C, Das K, et al.. (2026). The Sexual Health and Well-being of Individuals With Complete Androgen Insensitivity Syndrome (CAIS).. Journal of pediatric and adolescent gynecology. https://doi.org/10.1016/j.jpag.2025.10.014