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

Department of Pediatrics, Division of Pediatric Endocrinology (A.B.W., C.J.M.); Department of Urology and Chief, Pediatric Urology, James Buchanan Brady Urological Institute (J.P.G.); and Department of Medical Psychology and Pediatrics (J.M.), The Johns Hopkins University School of Medicine, and Department of Biochemistry, The Johns Hopkins University School of Public Health and Hygiene (T.R.B.), Baltimore, Maryland 21287; Department of Psychiatry, Division of Child Psychiatry and Program of Developmental Psychoendocrinology, Columbia University College of Physicians and Surgeons and New York State Psychiatric Institute (H.F.L.M.-B.), New York, New York 10032; and Department of Pediatrics, Division of Pediatric Endocrinology, University of Miami School of Medicine (G.D.B.), Miami, Florida 33101

Address all correspondence and requests for reprints to: Dr. Amy B. Wisniewski, Department of Pediatrics, Division of Pediatric Endocrinology, The Johns Hopkins University School of Medicine, 600 North Wolfe Street, Park 211, Baltimore, Maryland 21287.

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.

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