Missing and dismissing the impact of periods. Outcomes of focus groups of teens with period concerns.

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 ( = 12) and one with parents ( = 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.