Abstract
Objective: 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. Methods: This was a digital surveillance study analyzing X posts between January 1st, 2020 and September 30th, 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. Results: 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%). Conclusions: 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.