Attitudes Toward Clinical Management of Intersexuality: The Voices of 46,XY Adult Patients


Home	Search	Current issue	Archive	Site help
Current GGH - Vol. 24 No. 1 View table of contents Download PDF
Click here to subscribe

GGH at a glance

Volume 20, Issue 3, September 2004

Table of Contents 20-3

Attitudes Toward Clinical Management of Intersexuality: The Voices of 46,XY Adult Patients

Controversies regarding the care of individuals born with intersexuality prompted a stream of adult followup studies of psychosocial and psychosexual functioning. Far less attention has been directed at the attitudes held by former patients toward treatment policies. The paper by Meyer-Bahlburg et al represents a marked exception. Specifically, participants were asked about their satisfaction with assigned gender as well as their opinions regarding the desirability of a ‘third gender,’ and the optimal age for genital surgery.

Attitude data were collected on 46,XY adults who had presented to a pediatric endocrinology clinic with varying degrees of genital ambiguity. The study was a postal survey followed by a physical examination. A total of 72 completed the questionnaire (32 men and 40 women; 18-60 years old). Based upon appearance of the genitalia at time of referral, participants were classified with ambiguous genitalia (AMBI; 21 men, 18 women), micropenis (MICRO; 11 men, 5 women), or female external genitalia (FEG; 17 women). The AMBI group consisted of individuals born with microphallus associated with perineoscrotal hypospadias secondary to various intersex syndromes. MICRO syndromes were attributed to hypergonadotropic hypogonadism, hypogonadotropic hypogonadism, and idiopathic types. The FEG group was made up mostly of patients with complete androgen insensitivity.

Most participants were “mainly satisfied” with assigned gender (85%). In male AMBI and MICRO 68% replied their genitalia appeared unusual, and 76% complained that their penis was too small. Whereas, in female AMBI and MICRO, 39% thought their genitals looked unusual. The majority of participants (73%) were either mainly or somewhat satisfied with sexual functioning.

Only 15% endorsed an assignment of a third gender as a strategy to avoid genital surgery. However, there was a statistical trend for those not satisfied with their own gender to endorse this. When asked about surgical correction of a hypothetical child born with ambiguous genitalia, 67% did not endorse the option of postponing genital surgery until adulthood. When asked to employ hindsight regarding their own genital surgery, 47% thought the procedure should be performed during infancy, 24% recommended postponing surgery until adolescence, and 22% thought the procedure should have been postponed until their adult years. FEG women almost uniformly endorsed waiting for surgery until adulthood.

Meyer-Bahlburg HF, Migeon CJ, Berkovitz GD, Gearhart JP, Dolezal C, Wisniewski AB. Attitudes of adult 46, XY intersex persons to clinical management policies. J Urol. 2004 Apr;171(4):1615-9.

Editors' Comment: Several findings of this study are noteworthy. First, the majority of the 46,XY adult patients with intersexuality expressed satisfaction with assigned gender. This finding has been corroborated in independent studies.¹ Second, 45% were mainly satisfied with their current sexual functioning (while 28% were somewhat satisfied and 27% mainly dissatisfied). Readers should be cautioned against assuming that dissatisfaction with sexual functioning is necessarily related to the quality of the surgical reconstruction. Sexual problems in the general population of men and women are reported to be high.² Without a healthy comparison group, the rates of satisfaction/dissatisfaction reported in this study are difficult to evaluate. In addition, the best predictors of sexual distress in women are markers of general emotional well-being and emotional relationship with the partner during sexual activity. In contrast, physical aspects of the sexual response in women, including arousal, vaginal lubrication, and orgasm, are poor predictors.³ Because survey respondents may assign different interpretations to single questionnaire items, the precise meaning of responses await more detailed assessments. Consistent with patient advocacy groups (eg, the Intersex Society of North America), the majority of survey participants opposed a third gender option. It is reassuring that the message obtained from former patients and patient advocacy groups coalesce in this critical aspect of clinical decision-making.

David E. Sandberg, PhD

References - (linked to )

Home | Search | Current Issue | Archive | Site Help

GGH at a Glance | Editorial Board | Contact Us | Subscribe | Announcements

Online Resources | PDF Reader | Prime Health Consultants, Inc.