Endometriosis Communities on Reddit: Quantitative Analysis (Preprint)

Federica Bologna, Rosamond Thalken, Kristen Pepin, Matthew Wilkens
2024 · doi:10.2196/preprints.57987 · W4409009457
preprint OA: closed CC0
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⚙ AI-generated summary by gemini-2.5-flash-lite, 2026-06-06 ⓘ

Analysis of over 30,000 posts from Reddit endometriosis communities revealed key topics, user needs for empathy and experiential knowledge, and associations between discussed personas and support intents.

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Abstract

BACKGROUND Endometriosis is a chronic condition that affects 10% of the people with a uterus. Due to the complex social and psychological impacts caused by this condition, people with endometriosis often turn to online health communities (OHCs) for support. OBJECTIVE Prior work identifies a lack of large-scale analyses of the experiences of patients with endometriosis and of OHCs. This study aims to fill this gap by investigating aspects of the condition and aggregate user needs that emerge from 2 endometriosis OHCs, r/Endo and r/endometriosis. METHODS We used latent Dirichlet allocation topic modeling, an unsupervised machine learning method, to extract the subject matter (“topic”) of >30,000 posts and >300,000 comments. In addition to latent Dirichlet allocation, we leveraged supervised classification. Specifically, we fine-tuned a series of the DistilBERT models to identify the people and relationships (personas) a post mentions as well as the type of support that the post seeks (intent). Combining the results of these 2 methods, we identified associations between a post’s topic, the personas mentioned, and the post’s intent. RESULTS The most discussed topics in posts were medical stories, medical appointments, sharing symptoms, menstruation, and empathy. Through the combination of the results from topic modeling and supervised classification, we found that when discussing medical appointments, users were more likely to mention the endometriosis OHCs than medical professionals. Medical professional was the least likely of any persona to be associated with empathy. Posts that mentioned partner or family were likely to discuss topics from the life issues category, particularly fertility. Users sought experiential knowledge regarding treatments and health care processes, and they also wished to vent and establish emotional connections about the life-altering aspects of the condition. CONCLUSIONS We conclude that members of the OHCs need greater empathy within clinical settings, easier access to appointments, more information on care pathways, and more support for their loved ones. Endometriosis OHCs currently fulfill some of these needs as they provide members with a space where they can receive validation, discuss care pathways, and learn to manage symptoms. This study demonstrates the value of quantitative analyses of OHCs. Computational analyses can support and extend findings from small-scale studies about patient experiences and provide insights into hard-to-reach groups. Finally, we provide recommendations for clinical practice and medical training programs.

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Condition tags

endometriosis

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (72)

Source provenance

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