• Journal article

Seeking support and treatment: A thematic analysis of tweets about the experience of endometriosis

Tragantzopoulou, P. and Giannouli, V. 2025. Seeking support and treatment: A thematic analysis of tweets about the experience of endometriosis. Journal of Endometriosis and Pelvic Pain Disorders. Advanced online publication. https://doi.org/10.1177/22840265241312516

TitleSeeking support and treatment: A thematic analysis of tweets about the experience of endometriosis
TypeJournal article
AuthorsTragantzopoulou, P. and Giannouli, V.
Abstract

Background:
Endometriosis significantly affects women’s quality of life, yet remains underrepresented in public discourse. This study aimed to explore the lived experiences and challenges of women with endometriosis as expressed on Twitter/X.
Methods:
A total of 2000 tweets were collected between September 2023 to November 2023 using relevant hashtags. Tweets were thematically analyzed using NVivo to identify recurring patterns in women’s experiences with endometriosis.
Results:
Findings indicated that 35% of the tweets described chronic pain, difficulty completing daily tasks, and concerns about infertility. In 30% of the tweets, women also discussed various treatments, including surgery, medication, and dietary modifications, with a notable focus on weight loss and healthy eating. However, a problematic preoccupation with food and weight was observed in discussions about dietary changes. A recurring theme observed in the remaining tweets was the feeling of being dismissed by healthcare providers, with many addressing gender dynamics and bias in the medical field.
Conclusion:
This study highlights the power of Twitter/X as a platform for raising awareness about endometriosis. The findings underscore the need for improved healthcare services and the development of supportive communities for women with the condition.

JournalJournal of Endometriosis and Pelvic Pain Disorders
ISSN2284-0265
2284-0273
Year2025
PublisherSage
Publisher's version
License
CC BY 4.0
File Access Level
Open (open metadata and files)
Digital Object Identifier (DOI)https://doi.org/10.1177/22840265241312516
Publication dates
Published online09 Jan 2025

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