Purpose: To study what adult women with congenital adrenal hyperplasia (CAH) thought about the timing of genital surgery.
Methods: As part of a larger follow-up study performed between the years 2002-2005 there were questionnaires concerning genital surgery, type of surgery, their thoughts about timing of genital surgery and experience of information about surgery. Early surgery was defined as ≤4 years of age and late ≥10 years. The medical and surgical files were reviewed.
Results: 62 women with CAH due to 21-hydroxylase deficiency, mean age 28 years (18-63) were included. The age at first genital surgery was 3 years (0-28 years) in the 52 patients (84%) who had had genital surgery, with 60% had early surgery (≤4 years) and 29% late (≥10 years). Almost half of the cohort had a positive experience of the information about surgery, a third had no opinion and a fifth had a negative experience. Of the women 39% thought that early surgery was good, while 19% thought it should be done during or after puberty and 42% had no opinion. Of those preferring early surgery 70% had early surgery themselves. Vaginal surgery was less common among those favoring early surgery. Age, phenotype, genotype, decade of surgery and experience of the information about surgery did not differ significantly between the three groups.
Conclusion: Equal numbers of women had no opinion regarding age at surgery or preferred early surgery while 19% thought it would be preferred to have surgery during or after puberty.
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