A team of medical researchers reports that intersex people subjected to intersex genital surgery as infants are dissatisfied with the results of that surgery – surgery which remains a standard treatment for intersex infants. 

In a world first, the team consulted intersex people with androgen insensitivity syndrome (AIS) on their surgery outcomes. The numbers are revealing:

Dissatisfaction with function of the surgical result (47.1%) and clitoral arousal (47.4%) was high in XY,DSD partially androgenized females after feminization surgery. Dissatisfaction with overall sex life (37.5%) and sexual anxieties (44.2%) were substantial in all XY,DSD individuals. Problems with desire (70.6%), arousal (52.9%), and dyspareunia (56.3%) were significant in XY,DSD complete females. 46,XY partially androgenized females reported significantly more often partners of female (9.1%) or both sexes (18.2%) and dyspareunia (56.5%) compared with controls. Individuals with complete androgen insensitivity syndrome stated significant problems with desire (81.8%), arousal (63.6%), and dyspareunia (70%).

Please note that OII rejects medically pathologizing concepts and terms such as XY,DSD and Disorders of Sex Development.

Authors:

Birgit Köhler, Eva Kleinemeier, Anke Lux, Olaf Hiort, Annette Grüters, Ute Thyen and the DSD Network Working Group

Author affiliations:

Department of Pediatric Endocrinology (B.K., A.G.), University Children’s Hospital, Charité, Humboldt University, 13353 Berlin, Germany; Department of Pediatric and Adolescent Medicine (E.K., O.H., U.T.), University of Lübeck, 23562 Lübeck, Germany; and Institute for Biometry and Medical Informatics (A.L.), Otto von Guericke University, 39120 Magdeburg, Germany

Correspondence & reprints requests:

Address all correspondence and requests for reprints to: Dr. Birgit Köhler, Department of Pediatric Endocrinology, University Children’s Hospital, Charité, Augustenburger Platz 1, 13353 Berlin. E-mail: birgit.koehler@charite.de.

Abstract

Background:

Prenatal deficit of androgens or androgen action results in atypical genitalia in individuals with XY disorders of sex development (XY,DSD). XY,DSD include mainly disorders of gonadal development and testosterone synthesis and action. Previously, most XY,DSD individuals were assigned to the female sex. Constructive genital surgery allowing heterosexual intercourse, gonadectomy, and hormone therapy for feminization were often performed. However, outcome studies are scarce.

Objective:

Our objective was evaluation of satisfaction with genital surgery and sexual life in adults with XY,DSD.

Design and Methods:

We evaluated 57 individuals with XY,DSD from the German multicenter clinical evaluation study with a condition-specific questionnaire. The individuals were divided into subgroups reflecting the absence/presence of partial androgen effect or genital constructive surgery.

Results:

Dissatisfaction with function of the surgical result (47.1%) and clitoral arousal (47.4%) was high in XY,DSD partially androgenized females after feminization surgery. Dissatisfaction with overall sex life (37.5%) and sexual anxieties (44.2%) were substantial in all XY,DSD individuals. Problems with desire (70.6%), arousal (52.9%), and dyspareunia (56.3%) were significant in XY,DSD complete females. 46,XY partially androgenized females reported significantly more often partners of female (9.1%) or both sexes (18.2%) and dyspareunia (56.5%) compared with controls. Individuals with complete androgen insensitivity syndrome stated significant problems with desire (81.8%), arousal (63.6%), and dyspareunia (70%).

Conclusions:

Care should be improved in XY,DSD patients. Constructive genital surgery should be minimized and performed mainly in adolescence or adulthood with the patients’ consent. Individuals with DSD and their families should be informed with sensibility about the condition. Multidisciplinary care with psychological and nonprofessional support (parents, peers, and patients’ support groups) is mandatory from child to adulthood.