Background: Despite a high prevalence, menstrual issues are often normalised or trivialised and undermanaged in young people (YP). Uncontrolled dysmenorrhoea and heavy menstrual bleeding have a vastly negative impact on the quality of life of YP, especially when these issues are compounded by the social and emotional complexities of navigating adolescence.

Objectives: The Longitudinal Study of Teens with Endometriosis, Period and Pelvic Pain (LongSTEPPP) project is a 5-year study aiming to understand factors that contribute to endometriosis, period and pelvic pain in YP and to examine long-term outcomes.

Design: Focus groups (FGs), held as part of co-design, sought to ensure that the perspectives and concerns of YP and their parents were incorporated into the longitudinal study design.

Methods: YP and their parents were invited to participate in an online FG after completing a survey about periods. The online survey was also part of the co-design of LongSTEPPP and was advertised primarily through social media channels.

Results: Four FGs were held, including three with YP (n  = 12) and one with parents (n  = 3). Major themes to emerge were (1) YPs experiences, including the physical and psychological impact of pain and bleeding; (2) pain and pain management; and (3) education. Mental health burden was significant on YP, with some reporting suicidal ideations. YP and their parents reported a lack of knowledge and awareness about menstrual issues among societies, healthcare professionals, and schoolteachers.

Conclusion: This study identified the substantial impact of periods on YP, and their parents' lives, the challenge of navigating a chronic pain condition in adolescence, and the lack of awareness in society and among professionals. Through the co-design model, these findings have informed the longitudinal study to ensure that it will adequately measure the concerns of YP and their parents.