Exploring the Role of a WhatsApp Online Community in Supporting the Needs of Women Living with Endometriosis in Malaysia: An Interview Study

The internet and social media offer women new opportunities to reach out and connect with others in a safe, anonymous and mutually supportive environment. For women affected by endometriosis, considerable challenges often have to be addressed with limited or no help from traditional support networks. Using "MyEndosis" WhatsApp group as a case study, this research explored the experiences of women who access this novel form of support. Fifteen women (aged 34 to 51 years) participated in a qualitative interview. Using inductive thematic analysis, three interrelated themes were generated: 1) Unmet support needs - the impact of endometriosis on the lives of the women and their unmet support needs. 2) Connecting with similar others - This theme captures the importance of finding other women who share similar experiences and connecting with them online, and 3) Sharing and caring online - This final theme explains how women living with endometriosis engage with and benefit from the "MyEndosis" WhatsApp community. Our findings illustrate how the novel WhatsApp community provided a safe and supportive community through which women affected by endometriosis could address their various unmet support needs (e.g, informational, emotional), share experiences and learn from others. Furthermore, our findings confirm how the many and considerable challenges of living with endometriosis in Malaysia appear to have persisted over time but provide encouraging evidence that through everyday digital technology and social media, previously hidden and isolated women may become empowered to help not just themselves but also others around them.