Perceptions of endometriosis surgery on TikTok: quality and implications for patient counselling.

Abstract

Background: TikTok is a popular platform for sharing health experiences, including those related to endometriosis. However, the quality and tone of the surgical information shared remain unclear.

Objectives: To characterise TikTok content regarding perceptions of surgical management for endometriosis and analyse content for information quality and differences between healthcare professionals and patients.

Methods: A cross-sectional analysis of the top 100 most-viewed TikTok videos under the search term "endometriosis surgery" was conducted on September 22, 2024. Videos were included if in English, referenced "endometriosis," and mentioned "surgery," "operation," or "laparoscopy." Two independent reviewers assessed creator identity, tone, and content. The brief DISCERN tool evaluated information quality.

Main outcome measures: Primary outcomes included the perceived benefits and drawbacks of surgery, tone towards surgical intervention, and thematic content. Secondary outcomes included DISCERN scores and comparison of content across creator identities.

Results: Of the included videos (2021-2024), 80% were created by patients. Most conveyed a neutral tone (41%) towards surgery. Perceived benefits included therapeutic effects (68%) and diagnostic clarity (61%). Reported drawbacks were postoperative recovery (58%) and symptom persistence (22%). Common themes among patients included barriers to surgery (35%), medical gaslighting (30%), delayed diagnosis/misdiagnosis (25%), and inadequate presurgical counselling (20%). Median DISCERN scores were significantly lower for patient videos (1.00) vs. healthcare professionals (1.96; P<0.001).

Conclusions: TikTok content on endometriosis surgery is largely driven by patient narratives that highlight both hope and frustration. The low quality of information underscores the need for accessible, evidence-based educational content. Our findings represent a cross-sectional snapshot subject to algorithmic ranking and platform dynamics.

What is new?: This is the first study to systematically evaluate TikTok content focused on surgical management of endometriosis, demonstrating that patient-generated videos overwhelmingly drive the conversation. While patients frequently describe benefits such as diagnostic clarity and symptom relief, they also highlight barriers to surgery, postoperative challenges, recurrent symptoms, and experiences of medical gaslighting. Patient-created videos had significantly lower information quality than provider-generated content, underscoring a critical gap in evidence-based surgical education on social media and an opportunity for clinician engagement.