Complete Androgen Insensitivity Syndrome: Long-Term Medical, Surgical, and Psychosexual Outcome¹

TLDR

There is controversy over treatment guidelines for intersex children because long‑term medical, surgical, and psychosexual outcomes are poorly documented. The study evaluated 14 women with complete androgen insensitivity syndrome through questionnaires and clinical examinations to assess their physical status, psychosexual development, and attitudes toward treatment. Overall, participants reported satisfactory secondary sexual development, sexual function, and gender identity, with only a few cases of dissatisfaction linked to abuse or obesity, and all expressed contentment with being raised female, though the study identified areas for improving long‑term care.

Abstract

Controversy concerning the most appropriate treatment guidelines for intersex children currently exists. This is due to a lack of long-term information regarding medical, surgical, and psychosexual outcome in affected adults. We have assessed by questionnaire and medical examination the physical and psychosexual status of 14 women with documented complete androgen insensitivity syndrome (CAIS). We have also determined participant knowledge of CAIS as well as opinion of medical and surgical treatment. As a whole, secondary sexual development of these women was satisfactory, as judged by both participants and physicians. In general, most women were satisfied with their psychosexual development and sexual function. Factors reported to contribute to dissatisfaction were sexual abuse in one case and marked obesity in another. All of the women who participated were satisfied with having been raised as females, and none desired a gender reassignment. Although not perfect, the medical, surgical, and psychosexual outcomes for women with CAIS were satisfactory; however, specific ways for improving long-term treatment of this population were identified.