Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development: Results from the german clinical evaluation study

Birgit Köhler, Eva Kleinemeier, Anke Lux, Olaf Hiort, Annette Grüters, Ute Thyen, I. Akkurt, N. Albers, O. Bartsch, D. Becker, M. W. Beckmann, R. H. Beetz, M. Bettendorf, P. Beyer, G. Binder, T. Boemers, C. Brack, A. Caliebe, H. G. Dietz, J. DobberphulH. Dörr, F. Eckholdt, R. Finke, M. Fisch, C. Flück, D. Frohneberg, I. Gätjen, H. Gitter, A. Grüters, R. Hampel, B. Hauffa, P. Heidemann, M. Heinz, M. Hemmighaus, J. Hensen, U. Hofmann, S. Höhne, P. M. Holterhus, S. Hosie, K. Kapelari, B. Karges, Keller, W. Kiess, A. Körner, E. Korsch, S. Krege, U. Kuhnle-Krahl, D. L'Allemand-Jander, C. Leriche, B. Leube, E. Loeser, C. Lorenz, W. Marg, H. Mau, K. Mohnike, M. Morlot, P. Mullis, C. J. Partsch, R. Pfäffle, M. Ranke, A. Rauch, M. Riccabona, A. Richter-Unruh, F. Riepe, T. Rohrer, M. Roll, W. Rösch, S. Roth, K. Salzgeber, D. Schmidt, G. E. Schott, P. Schröter, H. P. Schwarz, D. Von Schweinitz, S. Siemer, G. Simic-Schleicher, G. Sinnecker, W. Sippell, M. Sohn, R. Stein, S. Tinschert, S. Uhlarik, K. L. Waag, M. Wabitsch, F. Waldhauser, D. Wallwiener, L. Wessel, M. Westenfelder, P. Wieacker, R. P. Willig, J. Wintgens, S. Wudy, L. Wunsch, A. Wusthof, U. Zeeh, G. Zoller

Research output: Contribution to journalArticlepeer-review

118 Scopus citations

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,DSDcomplete females. 46,XY partially androgenized females reported significantlymoreoften 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.

Original languageEnglish
Pages (from-to)577-588
Number of pages12
JournalJournal of Clinical Endocrinology and Metabolism
Volume97
Issue number2
DOIs
StatePublished - Feb 2012

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