ESPE Abstracts

Introduction: DSD patients present varied degrees of atypical genitalia. The social sex assignment and the surgery decisions must be proceeded by a multidisciplinary team approach with the family. Surgeries should be only performed by experienced surgeons. The current trend is the early correction, but some patients and non-governmental entities argue that the surgeries should be delayed until the patient’s consent.

Objective: To analyze the perspectives and feelings of adult DSD patients followed at a reference center in São Paulo regarding surgical approach.

Methodology: It was a transversal study. The patients were submitted to individualized semi-directed interviews to answer a questionnaire containing several questions regarding surgical procedures.

Results: The patients’ mean age was 37 y. The proportion of male and female social sex was 40% and 60%. 80.6% were 46,XY, 11.9% were 46,XX and 7.5% have chromosome DSD. 68% of them had atypical genitalia and 32% had female external genitalia. 89.5% of them concluded at least the high school. Partial gonadal dysgenesis and CAIS were the most frequent diagnosis. In 71% (33/46) of the patients the atypical genitalia were noted at birth. The median patient’s age at first surgery was 4.5 y in masculinizing (n: 23) and feminizing surgeries (n: 24), and 16 y in isolated gonadectomy (n: 18). Among the patients submitted to surgeries, 54% of them were submitted only to one surgical procedure and 21% of them were submitted to more than three surgical procedures. When the patients were asked about the ideal time to undergo genitoplasty (n = 43), 78% of them chose childhood. Only two patients related that adulthood would be the ideal time for genitoplasty and only one patient decided not to undergo surgery (a CAIS patient who decided against gonadectomy). There was a reduction of the severe discomfort related to atypical genitalia from 86% before surgery to 46% after surgery (P < 0.01). 8.8% of the 46,XY DSD patients (6/68) presented gender dysphoria. The mean age of the patients was 49.6 y and the mean age at gender change was 25.5 y.

Conclusion: Most adult DSD patients considered childhood the ideal time to correct their atypical genitalia. The severe discomfort related to atypical genitalia presented by most of the patients was significantly reduced after genitoplasty. An early treatment and follow up with a multidisciplinary team may achieve positive results on surgical approach of the atypical genitalia in childhood with low prevalence of gender dysphoria in adulthood.