Experiences of intimacy among people with bladder exstrophy

Previous research investigating the psychosocial and psychosexual impact of living with the complex genitourinary condition bladder exstrophy has been limited in scope and methodological quality. However, the limited evidence suggests that people with bladder exstrophy commonly encounter difficulties that might negatively impact their experiences of intimacy. We conducted an interpretative phenomenological analysis to explore intimacy in 6 participants aged 16 to 56 years. Participants discussed how their parents and later they themselves concealed their health condition. This concealment was associated with feeling safe and protected, yet shameful. Participants also discussed developing intimate knowledge of their own emerging identity while developing intimacy with others, as well as the importance of sharing the experience of bladder exstrophy with others in the development of intimate relationships. We discuss the findings in relation to theoretical issues of concealment, shame, attachment, psychosocial development, intimacy, and chronic illness.