from Part III - Management of specific disorders
Published online by Cambridge University Press: 04 May 2010
Introduction
The role of genital surgery in the treatment of intersex conditions is under intense scrutiny at present. The need for genital surgery must be urgently evaluated. The advent of well-organized support groups for intersex conditions has given patients the confidence to express their concerns and a platform from which to do so. There is increasing evidence from the patient support groups of dissatisfaction with surgery (AISSG, 2001; The Times, 2001). Adult patients feel damaged by their genital surgery, which in many cases was done before they were old enough to consent or to understand the long-term implications. In addition, some more thoughtful surgeons are recommending greater caution with the surgical approach to the treatment of intersex conditions (Schober, 1998). Patient dissatisfaction has led to a call in some quarters for a moratorium on genital surgery (ISNA, 2001).
Crucial to the debate on the role of genital surgery are data on the long-term outcome of surgery. Unfortunately, there are very few studies of adult patients with intersex conditions that look at psychosexual function and outcome. Although surgeons operate with the intention of improving the psychosocial and psychosexual outcome, there is little long-term follow-up of these children into adult life to confirm that this approach is the correct one. There is no evidence base on which to plan treatment and counsel patients. This may be because surgery is performed by paediatric surgeons who would not then follow their patients into adulthood.
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