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. Dobberphul; H. 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

doi:10.1210/jc.2011-1441

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. Dobberphul

H. 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

Department of Surgery

Charité – Universitätsmedizin Berlin
University of Lübeck
Otto-von-Guericke University

Research output: Contribution to journal › Article › peer-review

137 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 language	English
Pages (from-to)	577-588
Number of pages	12
Journal	Journal of Clinical Endocrinology and Metabolism
Volume	97
Issue number	2
DOIs	https://doi.org/10.1210/jc.2011-1441
State	Published - Feb 2012

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10.1210/jc.2011-1441

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Köhler, B., Kleinemeier, E., Lux, A., Hiort, O., Grüters, A., Thyen, U., Akkurt, I., Albers, N., Bartsch, O., Becker, D., Beckmann, M. W., Beetz, R. H., Bettendorf, M., Beyer, P., Binder, G., Boemers, T., Brack, C., Caliebe, A., Dietz, H. G., ... Zoller, G. (2012). Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development: Results from the german clinical evaluation study. Journal of Clinical Endocrinology and Metabolism, 97(2), 577-588. https://doi.org/10.1210/jc.2011-1441

@article{fead11a5d93141409ed05efe680ec663,

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

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.",

author = "Birgit K{\"o}hler and Eva Kleinemeier and Anke Lux and Olaf Hiort and Annette Gr{\"u}ters and Ute Thyen and I. Akkurt and N. Albers and O. Bartsch and D. Becker and Beckmann, \{M. W.\} and Beetz, \{R. H.\} and M. Bettendorf and P. Beyer and G. Binder and T. Boemers and C. Brack and A. Caliebe and Dietz, \{H. G.\} and J. Dobberphul and H. D{\"o}rr and F. Eckholdt and R. Finke and M. Fisch and C. Fl{\"u}ck and D. Frohneberg and I. G{\"a}tjen and H. Gitter and A. Gr{\"u}ters and R. Hampel and B. Hauffa and P. Heidemann and M. Heinz and M. Hemmighaus and J. Hensen and U. Hofmann and S. H{\"o}hne and Holterhus, \{P. M.\} and S. Hosie and K. Kapelari and B. Karges and Keller and W. Kiess and A. K{\"o}rner and E. Korsch and S. Krege and U. Kuhnle-Krahl and D. L'Allemand-Jander and C. Leriche and B. Leube and E. Loeser and C. Lorenz and W. Marg and H. Mau and K. Mohnike and M. Morlot and P. Mullis and Partsch, \{C. J.\} and R. Pf{\"a}ffle and M. Ranke and A. Rauch and M. Riccabona and A. Richter-Unruh and F. Riepe and T. Rohrer and M. Roll and W. R{\"o}sch and S. Roth and K. Salzgeber and D. Schmidt and Schott, \{G. E.\} and P. Schr{\"o}ter and Schwarz, \{H. P.\} and \{Von Schweinitz\}, D. and S. Siemer and G. Simic-Schleicher and G. Sinnecker and W. Sippell and M. Sohn and R. Stein and S. Tinschert and S. Uhlarik and Waag, \{K. L.\} and M. Wabitsch and F. Waldhauser and D. Wallwiener and L. Wessel and M. Westenfelder and P. Wieacker and Willig, \{R. P.\} and J. Wintgens and S. Wudy and L. Wunsch and A. Wusthof and U. Zeeh and G. Zoller",

year = "2012",

month = feb,

doi = "10.1210/jc.2011-1441",

language = "English",

volume = "97",

pages = "577--588",

journal = "Journal of Clinical Endocrinology and Metabolism",

issn = "0021-972X",

publisher = "Endocrine Society",

number = "2",

}

Köhler, B, Kleinemeier, E, Lux, A, Hiort, O, Grüters, A, Thyen, U, Akkurt, I, Albers, N, Bartsch, O, Becker, D, Beckmann, MW, Beetz, RH, Bettendorf, M, Beyer, P, Binder, G, Boemers, T, Brack, C, Caliebe, A, Dietz, HG, Dobberphul, J, Dörr, H, Eckholdt, F, Finke, R, Fisch, M, Flück, C, Frohneberg, D, Gätjen, I, Gitter, H, Grüters, A, Hampel, R, Hauffa, B, Heidemann, P, Heinz, M, Hemmighaus, M, Hensen, J, Hofmann, U, Höhne, S, Holterhus, PM, Hosie, S, Kapelari, K, Karges, B, Keller, Kiess, W, Körner, A, Korsch, E, Krege, S, Kuhnle-Krahl, U, L'Allemand-Jander, D, Leriche, C, Leube, B, Loeser, E, Lorenz, C, Marg, W, Mau, H, Mohnike, K, Morlot, M, Mullis, P, Partsch, CJ, Pfäffle, R, Ranke, M, Rauch, A, Riccabona, M, Richter-Unruh, A, Riepe, F, Rohrer, T, Roll, M, Rösch, W, Roth, S, Salzgeber, K, Schmidt, D, Schott, GE, Schröter, P, Schwarz, HP, Von Schweinitz, D, Siemer, S, Simic-Schleicher, G, Sinnecker, G, Sippell, W, Sohn, M, Stein, R, Tinschert, S, Uhlarik, S, Waag, KL, Wabitsch, M, Waldhauser, F, Wallwiener, D, Wessel, L, Westenfelder, M, Wieacker, P, Willig, RP, Wintgens, J, Wudy, S, Wunsch, L, Wusthof, A, Zeeh, U & Zoller, G 2012, 'Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development: Results from the german clinical evaluation study', Journal of Clinical Endocrinology and Metabolism, vol. 97, no. 2, pp. 577-588. https://doi.org/10.1210/jc.2011-1441

TY - JOUR

T1 - Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development

T2 - Results from the german clinical evaluation study

AU - Köhler, Birgit

AU - Kleinemeier, Eva

AU - Lux, Anke

AU - Hiort, Olaf

AU - Grüters, Annette

AU - Thyen, Ute

AU - Akkurt, I.

AU - Albers, N.

AU - Bartsch, O.

AU - Becker, D.

AU - Beckmann, M. W.

AU - Beetz, R. H.

AU - Bettendorf, M.

AU - Beyer, P.

AU - Binder, G.

AU - Boemers, T.

AU - Brack, C.

AU - Caliebe, A.

AU - Dietz, H. G.

AU - Dobberphul, J.

AU - Dörr, H.

AU - Eckholdt, F.

AU - Finke, R.

AU - Fisch, M.

AU - Flück, C.

AU - Frohneberg, D.

AU - Gätjen, I.

AU - Gitter, H.

AU - Grüters, A.

AU - Hampel, R.

AU - Hauffa, B.

AU - Heidemann, P.

AU - Heinz, M.

AU - Hemmighaus, M.

AU - Hensen, J.

AU - Hofmann, U.

AU - Höhne, S.

AU - Holterhus, P. M.

AU - Hosie, S.

AU - Kapelari, K.

AU - Karges, B.

AU - Keller,

AU - Kiess, W.

AU - Körner, A.

AU - Korsch, E.

AU - Krege, S.

AU - Kuhnle-Krahl, U.

AU - L'Allemand-Jander, D.

AU - Leriche, C.

AU - Leube, B.

AU - Loeser, E.

AU - Lorenz, C.

AU - Marg, W.

AU - Mau, H.

AU - Mohnike, K.

AU - Morlot, M.

AU - Mullis, P.

AU - Partsch, C. J.

AU - Pfäffle, R.

AU - Ranke, M.

AU - Rauch, A.

AU - Riccabona, M.

AU - Richter-Unruh, A.

AU - Riepe, F.

AU - Rohrer, T.

AU - Roll, M.

AU - Rösch, W.

AU - Roth, S.

AU - Salzgeber, K.

AU - Schmidt, D.

AU - Schott, G. E.

AU - Schröter, P.

AU - Schwarz, H. P.

AU - Von Schweinitz, D.

AU - Siemer, S.

AU - Simic-Schleicher, G.

AU - Sinnecker, G.

AU - Sippell, W.

AU - Sohn, M.

AU - Stein, R.

AU - Tinschert, S.

AU - Uhlarik, S.

AU - Waag, K. L.

AU - Wabitsch, M.

AU - Waldhauser, F.

AU - Wallwiener, D.

AU - Wessel, L.

AU - Westenfelder, M.

AU - Wieacker, P.

AU - Willig, R. P.

AU - Wintgens, J.

AU - Wudy, S.

AU - Wunsch, L.

AU - Wusthof, A.

AU - Zeeh, U.

AU - Zoller, G.

PY - 2012/2

Y1 - 2012/2

N2 - 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.

AB - 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.

UR - https://www.scopus.com/pages/publications/84856780018

U2 - 10.1210/jc.2011-1441

DO - 10.1210/jc.2011-1441

M3 - Article

C2 - 22090272

AN - SCOPUS:84856780018

SN - 0021-972X

VL - 97

SP - 577

EP - 588

JO - Journal of Clinical Endocrinology and Metabolism

JF - Journal of Clinical Endocrinology and Metabolism

IS - 2

ER -

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

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