How Women Discuss Heavy Menstrual Bleeding in Online Forums ("It's Like Revenge of the Uterus"): Template Approach to Thematic Analysis.

Abstract

Background: Heavy menstrual bleeding (HMB) is a common condition that affects approximately 20% to 30% of women globally. However, despite significant physical, mental, and social impacts on the quality of life of women who experience HMB, they face barriers to both diagnosis and treatment. With current challenges to female reproductive autonomy growing on a global scale and with the stigma that surrounds menstruation, women with HMB may turn to online communities to access peer support and information. Online forums such as Reddit, which support the use of anonymous posting, may offer a space where those affected by HMB can share their experiences, seek support, and offer advice to others.

Objective: This study aimed to explore how those experiencing HMB use Reddit to share experiential knowledge, provide support, and share experiences of HMB within an online community space.

Methods: Data were collected from discussion threads on the TwoXChromosomes subreddit on Reddit. Publicly accessible posts were identified through a systematic search conducted on August 13 and 14, 2024, using keywords related to HMB. A template approach to thematic analysis was used to analyze the data. A priori codes were developed from existing literature on HMB and the research objective. The template was refined after further examination of the transcripts, with all transcripts being analyzed using the final template.

Results: The search initially identified 434 discussion threads. Threads were screened for relevance and user engagement, resulting in a final 13 (2.99%) threads being analyzed for this research. These comprised 1505 individual comments from 1115 unique users. Four central themes were identified: validation and camaraderie, life impacts of HMB, practical support, and medical treatment and management. In the validation and camaraderie theme, users frequently shared personal experiences and validated the experiences of others, challenging the normalization of debilitating symptoms and creating a shared sense of solidarity. When discussing the life impacts of HMB, users emphasized how it disrupts daily functioning, including work, relationships, and mental well-being, and poses serious physical health risks. In the theme of practical support, Reddit users exchanged strategies for managing symptoms, including recommending specific menstrual products, home and workplace adaptations and adjustments, and self-advocacy. The final theme of medical treatment and management explored Reddit users' frustration with health care experiences, particularly around the prioritization of fertility over quality of life. Hormonal contraception, intrauterine devices, and surgical interventions were discussed with varying degrees of satisfaction and concern. Overall, Reddit users reported a general dismissal of HMB within medical and social contexts.

Conclusions: Reddit serves as an important platform for individuals with HMB to validate their experiences, share practical knowledge, and seek peer support in the face of medical dismissal. This research provides insight into the usefulness of online spaces for people discussing HMB.