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A short paper titled "Long term psychological outcome for women with congenital adrenal hyperplasia: cross sectional review" is available for free from BMJ. The paper is written by John F. Morgan, Helen Murphy, J Hubert Lacey, and Gerard Conway and is a study of psychological morbidity and adjustment of the 18 women with congenital adrenal hyperplasia at the Central Middlesex Hospital.
In this paper, the authors claim that contrary to a previous publication, women with CAH seem to be psychologically well-adjusted, except that only four of them reported being sexually active, and among the four two said that they do not feel any sexual sensation. That is, the 18 women's score for psychological health was well within the normal range.
The "previous publication" cited here is "Long-term psychological evaluation of intersex children" by Slijper, Drop, Molenaar and de Muinck Keizer-Schrama (Archives of Sexual Behavior, Vol. 27, No. 2, 1998). After comparing both, however, it does not seem that two studies contradict. For one thing, the Slijper study's 39% psycopathology figure is for people with all intersex conditions, not just CAH; among the CAH women, only 25% are reported to experience psychological problems. For another, the 25% figure includes such diagnoses as gender identity disorder and mental retardation. Finally, being a study of children population, many participants are diagnosed with ADHD and ODD, some of which might dissipate in adulthood.
That said, we agree with Melissa Cull's commentary (also included in the download) that there is so much stigma associated with CAH or any other intersex conditions and it is hard to cope with it sometimes. Cull also makes a good point that women who are going through conventional clinics, as opposed to the specialized treatment center such as the one at Middlesex Hospital's, might be experiencing more psychological problems--not because of the medical condition, but because of how they are being treated.
Posted by Emi on Feb 1, 2005