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.
  
  
  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.
authors.affiliation: Department of Pediatric Endocrinology, University Children's Hospital, Charité, Humboldt University , 13353 Berlin, Germany. birgit.koehler@charite.de
authors.forename: Birgit
authors.initials: B
authors.lastname: Köhler
authors.forename: Eva
authors.initials: E
authors.lastname: Kleinemeier
authors.forename: Anke
authors.initials: A
authors.lastname: Lux
authors.forename: Olaf
authors.initials: O
authors.lastname: Hiort
authors.forename: Annette
authors.initials: A
authors.lastname: Grüters
authors.forename: Ute
authors.initials: U
authors.lastname: Thyen
mesh_terms: D000293:Adolescent; D000328:Adult; D016022:Case-Control Studies; D058490:Disorder of Sex Development, 46,XY / Q000453:epidemiology / Q000503:physiopathology / Q000534:rehabilitation / Q000601:surgery*; D005260:Female; D005835:Genitalia / Q000601:surgery*; D005858:Germany; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011183:Postoperative Complications / Q000453:epidemiology / Q000209:etiology; D011788:Quality of Life; D012725:Sexual Behavior / Q000502:physiology*; D055815:Young Adult