“If I wasn't a girl”: Experiences of adolescent girls with heavy menstrual bleeding and inherited bleeding disorders

BACKGROUND: Heavy menstrual bleeding (HMB) is a presenting symptom of an inherited bleeding disorder (BD) and results in hospitalizations, limitations of daily activities, and a reduction in quality of life. Adult women with BD report a sense of stigma, difficulties understanding their bleeding, and challenges with diagnostic labels. The experiences of adolescents with HMB and BD are unknown despite advances in medical management through the rapidly growing network of young women's hematology programs. OBJECTIVES: The objective of our qualitative study was to describe the experiences of adolescents with HMB with a BD and the impact on their day‐to‐day lives. PATIENTS/METHODS: Our qualitative study utilized semistructured interviews with adolescents with HMB after a BD diagnosis. We included adolescents with a BD within a multidisciplinary Young Women's Bleeding Disorders Clinic who had achieved menarche within the preceding 3 years and conducted interviews until theme saturation. All interviews were transcribed verbatim and analyzed using qualitative thematic descriptive analysis. RESULTS: We identified the following themes in nine participants: anxiety and embarrassment, especially related to school; isolation and “otherness”; increased cautiousness and planning because of HMB and BD; and empowerment and identity formation because of the diagnosis of a BD. CONCLUSIONS: Our study uncovers previously unappreciated experiences of adolescents with HMB and a BD. HMB is an isolating and stressful experience in adolescents, but a BD diagnosis results in identity formation and empowerment. Psychological support and facilitating connections to others with similar life experiences soon after diagnosis represents key areas for targeted interventions.