Sexual well-being in adolescent and young adults born with arm: the perspective of the patients

Purpose: Sexual well-being and sexual functioning are understudied in patients born with ARM. The aim of this exploratory study was to investigate sexual history, main fears, and problems encountered during sexual relationships. Methods: Before participating in a sexual education intervention, 21 adolescents or young adults (12 males; mean 28.8; SD 10.6) born with ARM, answered a ten-item questionnaire specifically developed to evaluate sexual well-being. Percentages and Chi-square were calculated. Results: 52.4% were married/had a partner. The majority (71%) declared that had sexual relationships. Mean age of the first sexual relationship was 18.8 (2.7) and 22.7 (3.8) for males and females, respectively. Females reported both more fear and experience of pain during sexual intercourse, compared to males. Main experienced problems and fears for male patients were loss of feces and premature ejaculation, followed by the fear of lack of erection and managing contraception. Main experienced problems and fears in females were loss of feces, pain, lack of desire, and lack of lubrication. In only few cases, patients asked for advices to a pediatric surgeon or to an adult surgeon specialized in ARM. Conclusions: Adult and adolescent patients may benefit of andrological/gynecological evaluation, psychological support, and sexual counseling to improve their sexual well-being.