BSPED2023 Poster Presentations Gonadal, DSD and Reproduction 1 (10 abstracts)
Long-term psychosocial and functional outcomes after genitoplasty in virilising congenital adrenal hyperplasia
Arianna Mariotto , Supul Hennayake , Tamas Cserni , Indi Banerjee , Gail Busby , Mars Skae , Leena Patel , Raja Padidela , Philip Murray , Jacqueline Nicholson , Julie Jones , Charlotte Richmond & Anju Goyal
Manchester University NHS Foundation Trust, Manchester, UK
Introduction: Timing of DSD surgery is debated. This study aimed to investigate outcomes of genitoplasty in CAH and assess patient’s opinion on surgery.
Materials and methods: In this ethically approved prospective study, surgically treated CAH girls ≥16 years completed an electronic questionnaire.Results27 patients were contacted 13 completed questionnaires, 10 declined, 4 did not reply. Current median age 27 (16–48) years and median age at surgery 18.3 (5.7–183.6) months. All identified themselves as female and were comfortable with assigned gender. Six are heterosexual, 3 homosexual, 3 bisexual, 1 unknown. 10 had been in a relationship. Following surgery, 6 had concerns about genitalia appearance and felt that it had negatively impacted formation of sexual relationships. Five reported poor self-esteem. Regarding the choice made for surgery, one was unhappy about having had surgery; 3 were not sure, 5 sometimes questioned that choice. When asked if they would have liked a different decision in terms of timing of surgery, 2 answered yes, 1 was not sure, 10 were satisfied with the decision taken by their parents. Nine disagreed with proposal to stop early surgery, whilst 2 were not sure and 2 agreed.
Conclusion: 46XX CAH girls identify themselves as females and are comfortable in their assigned gender. Following surgery, 46% have residual concerns regarding genital appearance, experienced complications including uncomfortable clitoral sensation on erection and felt this adversely affected sexual relationships. 77% of patients were satisfied with parental decision for early surgery. 69% wanted to retain choice for early surgery. More data are needed to support these preliminary results.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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