Awareness of fertility preservation strategy in patients with endometriosis: The Xverse (formerly Twitterverse) model

C Ferraro, Claudia Ferraro, Marco Reschini, Roberta Bellinghieri, Laura Sichenze, G Polenghi, Bianca Magni, A Di Fiore, Gianfranco Fornelli, Letizia Li Piani, Noemi Salmeri, Maíra Casalechi
In: Journal of Endometriosis and Uterine Disorders · 2025 · vol. 11 , pp. 100115 · doi:10.1016/j.jeud.2025.100115 · W4409643798
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

Analysis of X (formerly Twitter) posts revealed that healthcare professionals and private centers, rather than patient advocacy groups, predominantly discuss fertility preservation for endometriosis, indicating a need to improve patient engagement and awareness.

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Abstract

• X offers insights into public attitudes on FP and opportunities for better discussions. • Information is mainly given by private providers, with limited public institution engagement. • Private institutions’ focus may relate to the controversial and costly nature of FP. • Skepticism about FP’s efficacy and cost appears in tweets, including patient concerns. Women with endometriosis are potential candidates for fertility preservation (FP) and oocyte freezing. However, awareness of FP remains limited, and many women are unaware of this option. This study aimed to explore the level of awareness of FP in women with endometriosis by assessing the content on X (formerly Twitter) in order to evaluate the reach and impact of the shared information and to identify key contributors actively engaged in FP discussion. This was a digital surveillance study analyzing X posts between January 1 st , 2020 and September 30 th , 2024. Queries in the X words advance research tool were created to find messages that included “endometriosis” in combination with “oocytes” OR “eggs” OR “fertility preservation” OR “fertilitypreservation” Posts were categorized by content and user types. Descriptive statistics were used for analysis. A total of n = 202 tweets were initially captured and n = 107 tweets from n = 82 accounts were reviewed. Accounts discussing FP were mostly from healthcare professionals (22.0%) and private healthcare centers or companies (22.0%). Patients’ accounts made up 14.6%. The most common content category was informative posts directed to patients (41.5%). Discussions on FP in endometriosis on X were mostly supported by healthcare professionals and private healthcare centers/companies. Also, advocacy groups showed limited activity on X social platform. Although a significant proportion of posts were directed at patients, their active involvement remained limited. Our findings highlight the need to enhance the quality of FP information available in X in order to raise awareness among affected women.

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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 (21)

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