Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility

AIM: To understand the experiences of young women with a disorder of sex development when sharing information about their body with healthcare professionals, friends and intimate partners. BACKGROUND: Disorders of sex development are lifelong conditions that create bodily difference such as absence of reproductive organs which can impact on young women’s fertility and sexual experiences. DESIGN: Interpretive phenomenological analysis with thirteen young women (14-19 years old) with a disorder of sex development. METHODS: The young women chose to participate in either a face-to-face semi-structured interview or to complete a paper diary between 2011–2012. RESULTS: A superordinate theme focusing on the meaning bodily differences held for these young women is presented through three themes: self-awareness and communicating this to others; actualizing intimacy; and expressing meaning of altered fertility to self or professionals or partners. During early adolescence, the young women were guarded and reticent about sharing personal information about their disorder of sex development but as they moved towards adulthood, some of the young women learnt to engage in conversations with more confidence. Frustrations about their bodily differences and the limitations of their bodies were talked about as factors which limited physical spontaneity, impacted on their perceived sexual fulfilment and challenged the development or sustainability of close friendships or intimate partnerships. The young women wanted empathic, sensitive support from knowledgeable health professionals to help them understand their bodies. CONCLUSION: Attachment and a ‘sense of being’ were the concepts that were closely linked to the young women’s development of a secure identity.