Identification of early symptoms of endometriosis through the analysis of online social networks: A social media study

OBJECTIVE: Endometriosis is a complex full-body inflammation disease with an average time to diagnosis of 7–10 years. Social networks give opportunity to patient to openly discuss about their condition, share experiences, and seek advice. Thus, data from social media may provide insightful data about patient's experience. This study aimed at applying a text-mining approach to online social networks in order to identify early signs associated with endometriosis. METHODS: An automated exploration technique of online forums was performed to extract posts. After a cleaning step of the built corpus, we retrieved all symptoms evoked by women, and connected them to the MedDRA dictionary. Then, temporal markers allowed targeting only the earliest symptoms. The latter were those evoked near a marker of precocity. A co-occurrence approach was further applied to better account for the context of evocations. RESULTS: Results were visualised using the graph-oriented database Neo4j. We collected 7148 discussions threads and 78,905 posts from 10 French forums. We extracted 41 groups of contextualised symptoms, including 20 groups of early symptoms associated with endometriosis. Among these groups of early symptoms, 13 were found to portray already known signs of endometriosis. The remaining 7 clusters of early symptoms were limb oedema, muscle pain, neuralgia, haematuria, vaginal itching, altered general condition (i.e. dizziness, fatigue, nausea) and hot flush. CONCLUSION: We pointed out some additional symptoms of endometriosis qualified as early symptoms, which can serve as a screening tool for prevention and/or treatment purpose. The present findings offer an opportunity for further exploration of early biological processes triggering this disease.