Katinka Schweizer

Sexual Quality of Life of Individuals with 46,XY Disorders of Sex Development

INTRODUCTION There has recently been a growing acceptance that it is not only heterosexual functioning of surgically adjusted genitalia which should be considered when measuring the treatment outcome of persons with disorders of sex development (DSD) but also their overall sexual quality of life (SexQoL). AIM A comprehensive cross-sectional investigation of SexQoL of persons with 46,XY DSD. METHODS Forty-seven persons with 46,XY DSD (age 17-60 years) were examined by means of a questionnaire on various aspects of SexQoL. Scores were compared to a nonclinical convenience sample consisting of 145 women. Data were analyzed separately for diagnostic subgroups. Furthermore, persons whose external genitalia had been surgically corrected were compared with persons whose genitalia had been left unaltered. MAIN OUTCOME MEASURES The Multidimensional Scale of Sexuality, the German Questionnaire on Feelings of Inadequacy in Social and Sexual Situations (FUSS), items on sexual dysfunctions according to DSM-IV-TR and self-constructed measures on sexual-activity history (e.g., previous sexual experience), sexual anxieties, and satisfaction with overall sex life and sexual function comprised the standardized assessment instruments. RESULTS Compared with the nonclinical group, persons with 46,XY DSD had more often no partner (P = 0.056), felt more insecure in social (Mdn(DSD) = 17.0, Mdn(comparison) = 12.0, P = 0.001) and sexual situations (Mdn(DSD) = 17.0, Mdn(comparison) = 11.0, P = 0.006), had more sexual problems (Mdn(DSD) = 4.0, Mdn(comparison) = 3.0, P = 0.001), and were less satisfied with overall sex life (Mdn(DSD) = 3.0, Mdn(comparison) = 4.0, P = 0.000) and sexual function (Mdn(DSD) = 4.0, Mdn(comparison) = 4.0, P = 0.000). Results were inconsistent with regard to sexual-activity history (e.g., previous sexual experience). Participants who underwent genital surgery showed less dyspareunia (P = 0.027) but more fear of injuries during intercourse (P = 0.019) than those whose genitals were left unaltered. CONCLUSIONS SexQoL of persons with 46,XY DSD may be impaired. Differences in SexQoL between diagnostic subgroups, effect of corrective genital surgery, and the influence of gender assignment will have to be further investigated in future studies.

Sexual Quality of Life of Individuals With Disorders of Sex Development and a 46,XY Karyotype: A Review of International Research

This article summarizes the current state of research on Sexual Quality of Life (SexQoL) of adults with 46,XY Disorders of Sex Development (DSD)/Intersexuality. An extensive literature search yield 21 studies published between 1974–2007, examining sexual aspects in individuals with 46,XY DSD. However, many of them lack methodological quality. The results are inconsistent but overall indicate that SexQoL of individuals with 46,XY DSD is impaired, particular with regard to sexual dysfunctions and sexual satisfaction. Future studies on SexQoL should focus more on qualitative aspects of sexuality and investigate medical and psychosocial risk factors such as sex-corrective surgery and parental bonding.

Gender experience and satisfaction with gender allocation in adults with diverse intersex conditions (divergences of sex development, DSD)

The aims of this mixed-methods study were to: (1) describe the gender experience and level of satisfaction with gender allocation of intersex persons and (2) explore the spectrum of their gender identities. Of the 69 participants with a number of divergences of sex development (DSD), gender allocation at birth was female in 83% and male in 17%. Seventy-five per cent were satisfied with gender allocation. As adults, 81% lived in the female gender role, 12% in the male role and 7% chose other roles. Nine per cent reported gender change or reallocation. Twenty-four per cent reported an inclusive ‘mixed’ two-gender identity, including both male and female elements, and 3% reported a neither female nor male gender identity. Twenty-six per cent were highly uncertain about belonging to a specific gender, 14% received increased transgender scores on the gender identity questionnaire (GIQ). The dichotomous categorisation of gender fails to capture the gender experiences of a significant proportion of our participants. Uncertainty of belonging to the female or male gender category as well as non-binary identifications highlight the need for alternative gender categories. A reconsideration of the medical approach towards intersexuality, which is currently based on a binary categorisation, is discussed.

Coping With Diverse Sex Development: Treatment Experiences and Psychosocial Support During Childhood and Adolescence and Adult Well-Being.

Objectives The purpose of this exploratory, retrospective, and correlational study was to examine the relationships between childhood treatment experiences, parental care, and social support, and outcome in adults with different diverse sex development (DSD). Methods The data of 69 participants from an exploratory questionnaire were collected in a retrospective German study. Results The majority received medical treatment in relation to their DSD during childhood and adolescence. Seventy percent reported having had a best friend and 29% a confidant during childhood. Sixty-one percent showed clinically relevant psychological distress, and 45% reported suicidal thoughts at least at one point in their lives. Quality of parental care and having had a best friend correlated positively with adult outcome, whereas treatment experiences correlated with aspects of impaired adjustment. Conclusions Social support and DSD-related treatment experiences appear to have an impact on adult well-being. Appropriate psychosocial care including peer-to-peer support should be made available to children with DSD and their families.

Zur Diversität sexueller Orientierungen

In diesem Beitrag wird das Konzept der sexuellen Orientierung aus sexualwissenschaftlicher Perspektive besprochen. Es wird verdeutlicht, dass Diversity Kompetenz in Hinblick auf sexuelle Orientierung in besonderer Weise gefragt ist. Zum einen haben Themen um Sexualitat und Geschlecht eine besondere ‚Fahigkeit‘, Entdifferenzierung auszulosen und Anders-Sein abzuwerten. Zum anderen zeichnet sich die Sexualitat der Menschen aber gerade durch Vielfaltigkeit von sexuellem Verhalten, sexueller Anziehung und sexuellen Identitaten aus. Die Grenzen der im konventionellen Sprachgebrauch verwendeten Begriffe der Hetero-, Homo- und Bisexualitat werden aufgezeigt und alternative Konzepte vorgestellt. Diskurse zur Fluiditat menschlichen Begehrens werden skizziert und empirische Befunde zur Haufigkeit nicht-heterosexueller Orientierungen diskutiert. Folgen fehlender Diversity Kompetenz fur nicht-heterosexuelle Mitglieder unserer Gesellschaft werden dargestellt.