Endocrine Abstracts

We work in a service at UCLH in London which cares for young people and adults with differences of sex development. Among other diagnoses CAH makes up quite a lot of our cohort of patients. Adolescents with CAH that our team see include those born with atypical genitalia who may have had, or have not had surgery in childhood on their clitoris or vagina. We also see adolescents with CAH who have issues with puberty and their periods. For adolescents with issues with their genitals (vagina/clitoris) we think about how this affects them and consider surgical options (eg. surgery to open the vagina/to reduce the side of the clitoris). We will talk about the experiences we hear from young people- those who have needed further surgery after having had early surgery, those unaware that they had genital surgery as a baby, and those who didn’t have surgery in childhood. As we care for young people 12+ years, we will be discussing the experience a young person may have in coming to clinic, how we talk to young people about genitalia and how they are thinking and feeling. We know lots of young people can feel very worried or anxious about talking about their genitalia, the thought of being examined or having not very nice memories of being examined in the past. We will talk through our approach if a young person is considering genital surgery and describe our process as an MDT to allow young people to make an informed decision for what feels right for them. We will mention some of the current issues regarding early surgery not being available and the implications going forward but we will be focusing on our patient cohort.