Sexuality in Adults with Differences/Disorders of Sex Development (DSD): Findings from the dsd-LIFE Study

Abstract

For various reasons, sexuality of individuals with differences/disorders of sex development (DSD) may be affected. The aim of the study was to describe sexual activity, satisfaction with sex life, satisfaction with genital function, and sexual problems in people with different DSD conditions. Data were collected from 1,040 participants in Europe. Many people with a variety of DSD conditions do not appear to be satisfied with their sex life, experience a variety of sexual problems, and are less sexually active than the general population; therefore sexuality should be explicitly addressed in the care of people with DSD.

Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet

“…Difficulties include differences in technical terms, modifications of surgical techniques over the years, heterogeneity of DSD conditions and reporting bias of surgeons towards the techniques they are most experienced with (66). Comprehensive assessment ideally includes recording complications and redo surgery (also in adulthood), cosmetic appearance, functional outcome (micturition, sexuality), and quality of psychosexual life as a minimum, all in relation to preoperative findings and assessed both by a professional and by self-assessment (67,68,69,70). The hypospadias objective penile evaluation score (HOPE) has been designed for standardised cosmetic evaluation by a professional of hypospadias surgery (71).…”

“…Different measures have been used for gynaecological and sexual function assessments of the female genitalia (e.g. (66,70,75)). Standardised tools for assessing longterm functional and cosmetic outcome of female genital surgery are in development.…”

A Call to Update Standard of Care for Children With Differences in Sex Development

“…In the DSD-LIFE study, participants who had Turner syndrome, Klinefelter syndrome, congenital adrenal hyperplasia (CAH), or XY-DSD were recruited from 14 European clinics. 25,26 Researchers examined rates of gender change and dysphoria as well as components of sexuality in this population. For those with CAH, rates of anorgasmia and genital anesthesia were higher among those who had undergone surgery than among those who had not.…”

“…For those with CAH, rates of anorgasmia and genital anesthesia were higher among those who had undergone surgery than among those who had not. 25 Those who had undergone surgery also reported less intercourse and experienced more difficulties with vaginal penetration. 25 Across DSD conditions, having had genital surgery was negatively associated with satisfaction with sex life.…”

Sex × Gender and Sexual Orientation in Relation to Stress Hormones and Allostatic Load

“…155 In parallel, research among intersex that are born with ambiguous genitalia often show nonheterosexual proclivities in adulthood due in part of differential sex hormone sensitivities. 156,157 A critical factor ignored in these studies was whether sexual and gender minority stress could explain inconsistent findings.…”