Understanding TikTok Users’ Perceptions of Surgical Management for Endometriosis

INTRODUCTION: TikTok is one of the most widely used social media platforms in the United States. Studies have demonstrated that patients are increasingly accessing TikTok for medical information and decision-making. Therefore, it is important for surgeons to understand the current social media landscape regarding surgical management of endometriosis to better inform their counseling and therapeutic approaches. OBJECTIVE: To primarily characterize TikTok users’ perceptions of surgical management for endometriosis and secondarily analyze content for information quality. METHODS: The term “endometriosis surgery” was entered in TikTok on September 22, 2024. Videos were included if 1) in English, 2) included the word endometriosis, and 3) included the word(s) “surgery,” “operation,” and/or “laparoscopy.” The top 100 videos were viewed by two independent reviewers who collected data on demographics and content. A modified DISCERN scale was applied to assess information quality. Differences in data collection were discussed and consolidated. Descriptive statistics were calculated, and DISCERN scores were averaged. RESULTS: TikTok videos included in this study were posted between 2021 to 2024, and 83% were created by patients. Most providers (n=14) who created videos were minimally invasive gynecologic surgeons (36%), reproductive endocrinologists (29%), and obstetrician-gynecologists (29%). Videos created by patients received, on average, more than twice as many likes as those created by providers (14,810 versus 7,135). When considering all videos included in our study, the majority had a neutral sentiment (45%) toward surgical intervention. Patient-created videos with above-average engagement (over 14,810 likes; n=12) discussed surgical complications, barriers to surgery, importance of support people in recovery, and detailed postoperative advice. Surgical procedures that were identified (n=83) included laparoscopic excision (43%), laparoscopy (35%), hysterectomy (8%), laser ablation (5%), diagnostic laparoscopy (5%), and/or other procedures (4%). The key benefits of surgery reported (n=44) were therapeutic effects (68%), diagnostic clarity (61%), patient validation (14%), and improved fertility (9%). However, creators additionally reported the following drawbacks (n=59): postoperative recovery (58%), recurrent/residual symptoms (22%), surgical complications (20%), and financial costs (5%). Only 21% of videos discussed surgical alternatives such as hormonal suppression and alternative medicine. Most content creators’ recommendations (n=41) centered around postoperative recovery (63%) and patient self-advocacy (44%). Many patients (n=20) shared stories of medical gaslighting (70%), ineffective management (50%), barriers to surgery (25%), and delayed diagnoses or misdiagnoses (20%). Average DISCERN scores for patients were 1.00 (n=83) compared to 1.96 for providers (n=14). CONCLUSIONS: These findings reveal that social media content on the surgical management of endometriosis is primarily driven by patient experiences. Although many patients reported the potential for diagnostic clarity and symptom relief, others endorsed frustration with barriers to surgery, surgical complications, and ineffective management. Low DISCERN scores for patient-created videos further suggest the need for dissemination of evidence-based information. Given the utilization of TikToks by patients, social media content produced by providers—particularly minimally invasive gynecologic surgeons—may represent an opportunity to improve understanding of surgical approaches for endometriosis. Our study highlights the critical need for improved patient education, communication between providers and patients, as well as postoperative care for those undergoing surgical management of endometriosis (Table 1).