Satisfaction with Genital Surgery and Sexual Life of Adults with XY Disorders of Sex Development: Results from the German Clinical Evaluation Study

Birgit Köhler(Cal Poly Humboldt), Eva Kleinemeier(University of Lübeck), Anke Lux(Otto-von-Guericke-Universität Magdeburg), Olaf Hiort(University of Lübeck), Annette Grüters(Humboldt-Universität zu Berlin), Ute Thyen(University of Lübeck), DSD Network Working Group(University of Lübeck), İltaç Akkurt(University of Lübeck), N. Albers(University of Lübeck), Oliver Bartsch, Daniel Becker, Matthias W. Beckmann, Rolf Beetz(University of Lübeck), Markus Bettendorf, P. A. Beyer(Humboldt-Universität zu Berlin), Gerhard Binder(University of Lübeck), Thomas M. Boemers, Christian Brack, Almuth Caliebe, H. G. Dietz, J. Dobberphul(University of Lübeck), H. G. Dörr(University of Lübeck), F Eckholdt(Humboldt-Universität zu Berlin), Rainer Finke(University of Lübeck), Michael Fisch, C.E. Flück, D. Frohneberg(University of Lübeck), Imke Gätjen(University of Lübeck), H. Gitter(Humboldt-Universität zu Berlin), Annette Grüters(Humboldt-Universität zu Berlin), Rudolf Hampel(Cal Poly Humboldt), BP Hauffa, P Heidemann(University of Lübeck), Marianne Heinz(University of Lübeck), M. Hemmighaus, J. Hensen(University of Lübeck), Uwe Hofmann(Humboldt-Universität zu Berlin), Sven Höhne, Paul‐Martin Holterhus(Humboldt-Universität zu Berlin), Stuart Hosie(Otto-von-Guericke-Universität Magdeburg), Klaus Kapelari(Cal Poly Humboldt), Beate Karges, Keller, W. Kiess, Antje Körner(University of Lübeck), Eckhard Korsch(Humboldt-Universität zu Berlin), S. Krege(University of Lübeck), U. Kuhnle-Krahl, D L'Allemand-Jander, C. Leriche(Cal Poly Humboldt), B. Leube(University of Lübeck), E. Loeser, Christian Lorenz, W. Marg(University of Lübeck), Hans Mau(Otto-von-Guericke-Universität Magdeburg), Klaus Mohnike(University of Lübeck), Michel Morlot, P E Mullis, C. J. Partsch(Humboldt-Universität zu Berlin), Roland Pfäffle(University of Lübeck), Michael B. Ranke, Angela Rauch(University of Lübeck), Michael Riccabona, Annette Richter-Unruh(University of Lübeck), Felix G. Riepe(University of Lübeck), Tilman Rohrer(University of Lübeck), M. Roll, Wolfgang Rösch(Humboldt-Universität zu Berlin), S. Roth(Otto-von-Guericke-Universität Magdeburg), Kirsten Salzgeber, Dominik Schmidt, G. Schott, P. Schröter, H. P. Schwarz, Dietrich von Schweinitz(Humboldt-Universität zu Berlin), S. Siemer(Humboldt-Universität zu Berlin), G. Simic-Schleicher(Humboldt-Universität zu Berlin), Gernot H.G. Sinnecker, W.G. Sippell(University of Lübeck), Michael Sohn(Humboldt-Universität zu Berlin), Raimund Stein(Humboldt-Universität zu Berlin), S. Tinschert(Humboldt-Universität zu Berlin), S. Uhlarik(University of Lübeck), K.-L. Waag(University of Lübeck), Martin Wabitsch(University of Lübeck), Franz Waldhauser, D. Wallwiener(University of Lübeck), L. Wessel(University of Lübeck), M. Westenfelder, Peter Wieacker, R. P. Willig, Jürgen Wintgens(Humboldt-Universität zu Berlin), Stefan A. Wudy(University of Lübeck), Lutz Wünsch, Achim Wüsthof(University of Lübeck), Uta Zeeh(Humboldt-Universität zu Berlin), G. Zöller(Humboldt-Universität zu Berlin), Silvano Bertelloni, Peggy T. Cohen–Kettenis(University of Lübeck), Ieuan A. Hughes, C Nihoul-Fékète(University of Lübeck), M. Ritzén(University of Lübeck), Martin Schöber
The Journal of Clinical Endocrinology & Metabolism
November 17, 2011
10.1210/jc.2011-1441
Cited by 178Open Access
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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.

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