From: Speiser PW, White PC. Congenital adrenal hyperplasia. N Engl J Med 2003;349(8):776-88.
URL: http://content.nejm.org/cgi/content/extract/349/8/776

"Improvements in the surgical correction of genital anomalies over the past two decades have led to earlier use of single-stage surgery �\ between two and six months of life in girls with 21-hydroxylase deficiency, a time when the tissues are maximally pliable and psychological trauma to the child is minimized. The long-term outcomes of the newer surgical procedures have yet to be evaluated. Retrospective reviews suggest that both the cosmetic and functional outcomes of genital surgery procedures as formerly practiced were often unsatisfactory. Surgery during adolescence is often fraught with psychological and technical difficulties. Such technically demanding surgery must only be done by experienced surgeons. Patient-advocacy groups have appealed to physicians to inform families about all the potential surgical pitfalls so that they can carefully consider whether and when surgery should be done. In addition, there is now heightened awareness of the need for psychological support for families with an affected child. Respect for patients' privacy has led to fewer genital examinations during childhood and adolescence. The transition from childhood to adulthood may require an interdisciplinary team of specialists to manage medical, gynecologic, and psychosexual concerns of patients."

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Below is my letter to New Endland Journal of Medicine


To the Editor:

As an intersex patient-advocate, I appreciate the fact that Phyllis Speiser and Perrin White acknowledged (in Aug. 21 issue) the role that the patient advocacy movement has played in improving the medical treatment of children with congenital adrenal hyperplasia. Regarding the controversy over the surgical correction of genital ambiguity, authors point out that "both the cosmetic and functional outcomes of genital surgery procedures as formerly practiced were often unsatisfactory," while "improvements in the surgical correction of genital anomalies over the past two decades have led to earlier use of single-stage surgery" despite the fact "the long-term outcomes of the newer surgical procedures have yet to be evaluated." Curiously, there is no mention of any reason that "ambiguous genitalia" should to be considered pathological or surgically treated anywhere in this article, leading readers to wonder: if the old surgery was so horrible and the new surgery hasn't been established yet, why are we rushing into the widespread use of the newer technique?

Emi Koyama
Director, Intersex Initiative
http://www.intersexinitiative.org/

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