Purpose <p>Bladder exstrophy-epispadias complex (BEEC) is a rare urogenital malformation. Children risk long-term urinary and genital dysfunction. The study aimed to describe health-related quality of life (HRQoL) experiences among children with BEEC and ultimately guide the development of a BEEC-specific HRQoL questionnaire.</p> Methods <p>Ten focus groups stratified by child age and sex were conducted in Sweden with 15 children aged 8–18, and 23 parents of children aged 2–17. Sessions were moderated, audio-recorded and transcribed verbatim. Reports of children’s BEEC-related HRQoL were extracted and content analyzed into categories sharing a common feature.</p> Results <p>1713 statements of the child’s HRQoL (1076 from parents, 637 from children) were identified and grouped into seven HRQoL categories. <i>Somatic experiences/Physical consequences due to BEEC</i> reflected experiences of urgency, leakage, smell, infections, pain/discomfort and bodily variations. <i>Living with the choice of whether or not to be open</i> described children’s decision-making about revealing BEEC to others. <i>Social relationships</i> highlighted the importance of peers and articulated social vulnerability. <i>Adaptational needs due to bladder dysfunction</i> included special needs in relation to the night-time, time schedules and clothing. <i>Functioning in environments outside home</i> included experiences with public toilets, school and leisure activities. <i>Psychological impact</i> encompassed emotional consequences and perceptions of different appearance. <i>Growing up with BEEC</i> included thoughts about sexuality, parenthood, the future and independence.</p> Conclusion <p>This first-reported focus group study in children with BEEC reveals physical, psychological, and social impacts across life domains. These findings justify and enable development of a disease-specific HRQoL questionnaire for children with BEEC.</p>