Body Image and Sexuality in Indonesian Adults with a Disorder of Sex Development (DSD)

Abstract

In Indonesia, disorders of sex development (DSDs) are not well recognized and medical care for affected individuals is scarce. Consequently, many patients live with ambiguous genitalia and appearance. We compared reported outcomes on body image, sexual functioning, and sexual orientation of 39 adults with DSDs (aged 18 to 41) and 39 healthy controls matched for gender, age, and residential setting (urban, suburban, rural). Differences in gender and treatment status (treated or untreated) were also explored. On body image, adults with DSDs reported dissatisfaction with sex-related body parts. Compared to the matched controls, women with DSDs reported greater sexual distress, and men with DSDs reported lower erectile and ejaculation frequencies, and more dissatisfaction with sexual life but not with sexual desire and activities. Men with DSDs who had undergone genital surgery reported higher erectile and ejaculation frequencies than untreated men. More women than men in the DSDs group reported a nonexclusive heterosexual orientation. DSDs and infertility had a great impact on sexuality. Fear of ostracism complicated DSD acceptance. Findings were compared to those of Western studies. Based on these results, education about DSDs and their psychosexual consequences may help reduce the sexual distress and problems in adults with DSDs and improve quality of life.

Emotional and behavioral problems in late-identified Indonesian patients with disorders of sex development

“…For some of the patients it is difficult to cope, and difficulties in coping may lead to the development of emotional problems such as depression and anxiety. The findings in this study are in line with previous findings in a study on sexuality; women with DSD reported sexual distress, fear of rejection, and avoidance to enter romantic relationships [18]. Our findings underline that it is important that patients with DSD will be referred immediately after identification of their condition to a specialized, multidisciplinary teams.…”

Disorders of sex development: advances in genetic diagnosis and challenges in management

“…26,44 Supporting evidence for early surgery suggests that high rates of stress in mothers, social stigmatization, and isolation of the child and adverse psychosexual development could be avoided by early surgical treatment. 58,60,61 Women, who had undergone surgery, when asked about the optimal timing of surgery, preferred scheduling the feminizing procedure in early childhood. [62][63][64] On the other hand, altered physical sex development does not usually represent a surgical emergency for newborns.…”

Multidisciplinary Management of Disorders of Sex Development in Indonesia, A Prototype in Developing Country

“…14 Adult untreated patients either they already changed their gender or still undecided gender were suffered from stigmatization and gender dysphoria and need thorough psychological assessment. [15][16][17] Culture is an important part of the context in which decisions are made on sex assignment. Attitudes concerning gender and sexuality, including the acceptance of intersexuality, may differ between various cultures.…”