Learning to assist women born with atypical genitalia: journey through ignorance, taboo and dilemma

Abstract

This aim of this article is to increase awareness of the psychological aspects of a range of conditions associated with atypical development of the reproductive-genital system. In highlighting some of clients’ experiences with how atypical genitalia is managed, useful parallels can be drawn for other services.

Many clients report being distressed by previous non-disclosure of crucial aspects of their condition by medical practitioners or non-discussion of the implications. Current concerns often relate to having to discuss atypical genitalia with sexual partners. Psychological formulation of the women's difficulties must take account of dominant ways of conceptualizing sex and sexuality in our society. Within a feminist-discursive framework, psychotherapeutic interventions can be helpful in a number of ways. Psycho-educational efforts can help to further increase clients’ expertise about their conditions and, thereby, increase control of decisions relating to treatment and to disclosure. However, information delivery would need to draw on alternative and subordinated discourses. Psychological therapy offers opportunities to further explore meanings of different aspects of the condition and to challenge notions of normalcy. Where such support is offered in a group format, it provides additional opportunities for making available different interpretations and solutions, and for reducing isolation.

Far from being an obscure area in medicine, management of conditions associated with atypical genitalia starkly exposes pervasive notions of ‘normal’ sexuality that underpin research and practice in many areas of health and illness, and as such should concern health professionals in general.

Keywords:

• Ambiguous genitalia
• intersex
• psychology
• feminist therapy
• women's health