Franziska Brunner

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.

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.

Gender Role, Gender Identity and Sexual Orientation in CAIS (“XY-Women”) Compared With Subfertile and Infertile 46,XX Women

The perception of gender development of individuals with complete androgen insensitivity syndrome (CAIS) as unambiguously female has recently been challenged in both qualitative data and case reports of male gender identity. The aim of the mixed-method study presented was to examine the self-perception of CAIS individuals regarding different aspects of gender and to identify commonalities and differences in comparison with subfertile and infertile XX-chromosomal women with diagnoses of Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS) and polycystic ovary syndrome (PCOS). The study sample comprised 11 participants with CAIS, 49 with MRKHS, and 55 with PCOS. Gender identity was assessed by means of a multidimensional instrument, which showed significant differences between the CAIS group and the XX-chromosomal women. Other-than-female gender roles and neither-female-nor-male sexes/genders were reported only by individuals with CAIS. The percentage with a not exclusively androphile sexual orientation was unexceptionally high in the CAIS group compared to the prevalence in “normative” women and the clinical groups. The findings support the assumption made by Meyer-Bahlburg (2010) that gender outcome in people with CAIS is more variable than generally stated. Parents and professionals should thus be open to courses of gender development other than typically female in individuals with CAIS.

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.

Fragebogen zum Erleben der eigenen Weiblichkeit (FB-W): Ergebnisse von Frauen mit Mayer-Rokitansky-Küster-Hauser Syndrom und Frauen mit polyzystischem Ovarsyndrom

Women with Mayer-Rokitansky-Kuster-Hauser syndrome (MRKHS) or polycystic ovary syndrome (PCOS) experience substantial changes in female body characteristics. It was investigated how this is associated with changes concerning the experience of ones own femininity. A questionnaire was developed to measure the experience of ones own femininity. The question-naire assesses how important several aspects are to women for their experience of their own femininity. Data from 49 women with MRKHS and 55 women with PCOS were compared to a non-clinical sample (932 women). The experience of their own femininity differed between the clinical groups as well as in comparison to the control sample. Diagnosis-specific characteristics emerged, which should be considered in the treatment of affected women. The developed questionnaire proved to be suitable for measuring differences in the experience of ones own femininity between groups of gynecological -patients.

Living with permanent infertility: A German study on attitudes toward motherhood in individuals with Complete Androgen Insensitivity Syndrome (CAIS) and Mayer–Rokitansky–Küster–Hauser Syndrome (MRKHS)

Abstract In this study the authors examined the issue of permanent infertility in two diagnoses of the diverse sex developments (DSD) spectrum: Complete Androgen Insensitivity Syndrome (CAIS) and Mayer-Rokitansky-KÏster-Hauser Syndrome (MRKHS). The participants with CAIS (n = 12) was older, showed a lower wish for a child and was less distressed about their infertility compared to participants with MRKHS (n = 49). Our data indicated an “indifferent” attitude toward motherhood in CAIS and an “ambivalent” attitude in MRKHS. Depression was frequent in both. Infertility is a source of distress. However, the two groups seem to cope in different ways. Comprehensive medical information and psychological support should be provided.

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.