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

Abstract

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.

Total Self-BAT scores associated with choice of heavy menstrual bleeding treatment

“…In accordance with prior research, our respondents indicated a lack of awareness and delay in diagnosis of underlying bleeding tendency in patients with HMB and plead for improving patient empowerment [22,[29][30][31] . Parker et al interviewed adolescents who describe the burden HMB gives on their identities and social quality of life, causing stress, anxiety and feelings of being "left out" [30] . Given the greater impact HMB has on the quality of life of (young) women, obtaining an accurate and timely diagnosis can lead to identity building and empowerment [22] .…”

“…HMB has a profound effect on the quality of life due to the severe bleedings [27,28] . In accordance with prior research, our respondents indicated a lack of awareness and delay in diagnosis of underlying bleeding tendency in patients with HMB and plead for improving patient empowerment [22,[29][30][31] . Parker et al interviewed adolescents who describe the burden HMB gives on their identities and social quality of life, causing stress, anxiety and feelings of being "left out" [30] .…”

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science

“…must also be considered as the health disparities for these populations are often compounded [ 117 ]. Some PWIBD feel a sense of ‘otherness’ or stigma due to their BD [ 118 , 119 ]; socially disadvantaged PWIBD may experience further isolation. The necessary DEI conversations and initiatives require all individuals to think critically and challenge their own assumptions.…”

The “lived” experience of menstruating women commencing anticoagulants

“…Our findings chime with work previously conducted in women with HMB, with or without a bleeding disorder, with similar themes emerging from the interviews. Parker et al’s [ 12 ] study of adolescent girls with a bleeding disorder and HMB identified the following themes: anxiety and embarrassment, isolation, increased cautiousness, and planning. Dutton and Kai [ 13 ] reported on women’s experiences of HMB and their medical treatment up to 10 years after the initial management in general practice.…”