Complete androgen insensitivity syndrome: long-term medical, surgical, and psychosexual outcome

J Clin Endocrinol Metab. 2000 Aug;85(8):2664-9. doi: 10.1210/jcem.85.8.6742.


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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adult
  • Aged
  • Androgen-Insensitivity Syndrome / physiopathology*
  • Androgen-Insensitivity Syndrome / psychology*
  • Androgen-Insensitivity Syndrome / surgery
  • Black People
  • Black or African American
  • Body Height
  • Body Image
  • Female
  • Humans
  • Male
  • Middle Aged
  • Psychosexual Development*
  • Sexual Behavior
  • Sexuality*
  • Surveys and Questionnaires
  • United States
  • White People