Following Fibroids: An Analysis of Social Media Narratives.

Background and Objectives: Many patients with uterine fibroids turn to social media for information, where fibroid-related content has grown substantially. To effectively address misconceptions and deliver high-quality, patient-centered care, physicians should be aware of the online information their patients encounter. This study analyzes fibroid-related content on social media to better understand the information being consumed.

The top 100 “liked” posts using “#fibroids” were identified on Facebook, Instagram, and TikTok using a third-party web scraping tool. Post demographics and content were assessed by two reviewers and were included if they were in English and related to uterine fibroids. Information quality was measured with the DISCERN instrument; understandability and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT).

A total of 300 social media posts were analyzed (100 per platform) from October 2019 to June 2024. TikTok posts had the highest engagement, with a median of 23,150 “likes” and 510,800 views. Content themes included promotional (51%), diet/supplements (41%), awareness (36%), and educational (33%). Alternative remedies were the most frequently mentioned treatment (46%), followed by surgery (29%) though with low mention of minimally invasive procedures (6.7%). DISCERN scores indicated poor information quality (mean 28.4), while PEMAT scores showed high understandability (mean 94.9%).

Social media contains a large volume of mostly low-quality fibroid-related content and especially lacks representation of minimally invasive surgical options. Improved efforts are needed to promote accurate, evidence-based information online.

Fibroid management, Fibroids, Misinformation, Online information, Social media

Social media refers to websites and applications that allow users to create, share content, and engage in social networking. As of 2021, approximately 78% of women in the United States used social media, with even higher usage rates of 81–84% among adults aged 18–49.1 Because social media plays a powerful role in shaping public opinion, it is important for physicians to remain informed about the online information their patients access to correct misconceptions and deliver high-quality, patient-centered care. Many patients with symptomatic fibroids turn to social media to supplement the information provided by their gynecologist.2 Around 60–70% of adults access social networking platforms, such as Facebook (FB), Snapchat, Instagram (IG), YouTube, and Twitter, at least once daily.1 Despite the growing availability of online health information and the increasing presence of obstetrics and gynecology professional societies on social media, little is known about the accuracy and quality of fibroid-related information. On IG, the number of posts with the hashtag #fibroids have surged from 143,197 in 2020 to over 337,000 in 2024.3 While multiple studies have examined the nature and accuracy of social media content on endometriosis and fertility, limited research exists on fibroid-related information.4–13 For instance, YouTube videos on uterine artery embolization have been found to be of average to poor quality, but there is minimal understanding of the content, authorship, or audience engagement with fibroid-related social media posts.14 This study aims to analyze the nature and accuracy of social media content about fibroids to better understand the information patients encounter on these platforms. METHODOLOGY The primary objective of this study was to quantitatively and qualitatively evaluate social media content related to fibroids. Secondary outcomes included user engagement, informational accuracy, and understandability of fibroid-related social media content. To assess these aims, the most “liked” social media posts related to fibroids on FB, IG, and TikTok (TT) platforms were extracted using the third-party web-scraping application, Apify.15 These platforms were chosen as they include access to publicly available content, are organized by caption and/or hashtag, and are three of the four most utilized social media sites by U.S. adults according to 2024 data with 3.1 billion, 2.0 billion, and 1.6 billion users, respectively.16,17 Apify was utilized to objectively identify popular posts, as platform search functions typically personalize results based on user history. FB was queried under the terms “fibroids” and #fibroids, IG with #fibroids, and TT with “fibroids.” FB and TT were queried on April 23, 2024. Due to IG’s systematic archiving of posts after approximately 30 days, the platform was searched on three separate occasions (April 30, May 29, and June 25, 2024) to analyze posts longitudinally. Posts not in the English language or unrelated to fibroids were excluded. FB groups were also excluded due to member-restricted access. Data on creator demographics and social media post content were collected by two independent reviewers (authors K.M. and S.O.) on a standardized form. Discrepancies were subsequently resolved by re-examination of the social media posts and consensus between the two reviewers. Creator and post demographics included self-identified or reviewer-determined authorship (patient, healthcare provider, professional society, nonprofit organization, and others), type of content (photo or video), number of likes, comments, views, and video length. Content creator age, gender, and location were collected when available. Posts were categorized thematically following methods implemented by Sinha et al.3 Additional data were collected regarding fibroid symptoms, treatments, and whether the creator expressed distrust toward healthcare providers or delays in diagnosis. Information reliability and accuracy were assessed using the validated modified 5-point DISCERN scale, a 15-question instrument plus an overall quality rating (supplementary materials).18 Understandability was assessed with the validated Patient Education Materials Assessment Tool (PEMAT), a systematic method to evaluate patient education audiovisual materials (supplementary materials).19 Both DISCERN and PEMAT instruments have used to analyze YouTube videos on uterine fibroid embolization and short video content related to endometriosis on TT.8,14 The study design included a predetermined sample of 100 posts per platform. Posts were reviewed in order of highest engagement until 100 met inclusion criteria. Descriptive statistics were used to summarize the collected data. Categorical data were presented as the number of observations (n) and corresponding percentages (%). Continuous variables were reported as mean and standard deviation. Data analysis was performed using Microsoft Excel (Microsoft Corporation, 2024).

A total of 804 social media posts were screened including 208 from FB, 333 from IG, and 260 from TT. One hundred posts from each platform with the most “likes” that met inclusion criteria were analyzed. Most FB posts (78%) and all TT posts (100%) were videos, while fibroid-related IG posts were almost entirely captioned photos (99%). TT posts ranged back to October 2019, while IG posts spanned February to June 2024 given the platform archiving (Figure 1). TT posts had the highest engagement, with a mean 23,150 likes, 583 comments, and 510,800 views. IG posts had the least engagement (mean 268 likes, 31 comments) (Table 1). Table 1. | Likes (Median, IQR) | Comments (Median, IQR) | Views (Median, IQR) | | |---|---|---|---| | 331 (93–2253) | 36 (12–126) | 13,085 (1,940-99,012) | | | 268 (172–632) | 31 (9–77) | — | | | TikTok | 23,150 (14,425-47,350) | 583 (208-1,331) | 510,800 (299,975–991,775) | Across all platforms, 63% of creators across all three platforms were women. Creators on TT were younger (TT 67% 20–40 years, IG 45%, FB 38%), while FB had the highest percentage of creators older than 40 years (39%), consistent with the overall age demographics of these platforms16. IG had the highest proportion of creators in the United States (IG 63%, FB 41%, TT 26%) (Table 2). TT had the most patient creators (TT 48%, IG 29%, FB 21%), whereas IG had more healthcare providers (IG 34%, FB 18%, TT 17%). FB had the most creators in the “other” category (FB 57%, TT 35%, IG 29%), including people selling supplements, promoting diets, or advertising products. Table 2. | TikTok | P-Value | ||| |---|---|---|---|---| | Creator gender | <.01 | ||| | Woman | 55 (55%) | 66 (66%) | 68 (68%) | | | Man | 28 (28%) | 11 (11%) | 25 (25%) | | | Nonbinary | 0 | 1 (1%) | 0 | | | Unknown/unspecified | 17 (17%) | 22 (22%) | 7 (7%) | | | Age | <.01 | ||| | 20–40 years | 38 (38%) | 45 (45%) | 67 (67%) | | | 40+ years | 39 (39%) | 32 (32%) | 21 (21%) | | | Unknown/unspecified | 23 (23%) | 23 (23%) | 12 (12%) | | | Country | <.01 | ||| | United States | 41 (41%) | 63 (63%) | 26 (26%) | | | United Kingdom | 3 (3%) | 10 (10%) | 0 | | | Other | 46 (46%) | 20 (20%) | 13 (13%) | | | Unknown/unspecified | 9 (9%) | 7 (7%) | 61 (61%) | Variables are presented as n (%). Personal experiences with fibroids were more frequently discussed on TT (41%) than on IG (30%) or FB (21%) (P < .001). A delay in fibroid diagnosis was mentioned in 15.0% of posts, and 25.7% of posts expressed distrust in physicians or the medical system, with no significant differences across platforms (Figure 2). Promotional content and diet/supplements were the two most prevalent themes (51.0% vs 35.7%), particularly on FB and TT (P < .05). IG included more content focused on advocacy, support, awareness, and medical management (Figure 3). Over half (54.3%) of posts did not mention any fibroid-related symptoms. Among those that did, bleeding (29.0%) and pain (24.3%) were most cited. FB and TT posts were more likely to promote alternative treatments for fibroids compared to IG (FB 66%, TT 57%, IG 15%, P < .05) (Figure 4). Common alternative therapies included castor oil packs, herbal teas, juice cleanses, and vaginal steaming, and most content related to diet and supplements was attempting to sell a product or service to the user. IG posts were more likely to omit any mention of medical, procedural, surgical, or alternative treatments altogether (IG 47%, TT 21%, FB 10%, P < .05) (Figure 4). Among evidence-based treatment options, surgery was the most discussed (28.6%) (Figure 4), with myomectomy (16.7%) more frequently mentioned than hysterectomy (12%) (Figure 5). Notably, minimally invasive surgical techniques such as laparoscopy, robotic surgery, and hysteroscopy were referenced less often than open surgical approaches (6.7% vs 12.7%) with only 20 posts across all platforms (Figure 5). Of these, most were personal experiences from patients (60%), while the remainder were educational posts from individual healthcare providers (40%). Each of these posts originated from different creator accounts, and none were affiliated with professional societies, healthcare systems, or nonprofit organizations. IG included the highest proportion of posts referencing minimally invasive surgery (IG 11%, FB 8%, TT 1%, P ≤ .05) with more posts from healthcare providers largely contributing to this difference (Figure 5). DISCERN scores were used to measure reliability of the informational content within each social media post. An average DISCERN score of 4–5 is considered excellent, 3.3–4 good, 2.6–3.3 fair, 1.9–2.6 poor, and 1–1.9 very poor.20 IG posts had higher mean DISCERN reliability scores compared to FB and TT (2.7 vs 2.3 vs 2.0), however overall, these scores still fell in the “poor” range. DISCERN scores for quality of treatment information were also “poor” to “very poor” (2.0 points IG, 1.8 FB, 1.6 TT), indicating informational content not consistent with current evidence-based findings. Understandability, however, was very high across all platforms with PEMAT scores of over .92 on a scale from 0 to 1, demonstrating that most social media content is very comprehensible to the average user. The higher the PEMAT score, the more understandable or actionable the material is, and a score of above 90% indicates an exceptionally understandable material.21 This study investigates the type of content and informational quality of social media posts related to uterine fibroids that patients see while gathering knowledge regarding their gynecologic condition and potential treatments. There is a plethora of comprehensible social media material on fibroids, much of which garners high levels of viewership and engagement, but the information is of varying quality and credibility. TT posts had the highest engagement with more views, likes, and comments when compared to FB or IG. There is an increasing trend within social media toward short videos (mainly between 15 and 90 seconds) to create relatable content that directly engages and potentially interacts with the viewer. IG Reels and YouTube Shorts are newer alternatives to TT and other video sharing platforms and are a potential avenue for further study as microvideo sharing continues to increase in popularity. With regard to TT, U.S. officials have expressed concerns about the company’s ownership and laws in China requiring Chinese companies to provide data requested by the government.22 Efforts to ban TT have continued since 2020, and in April 2024 the United States Congress passed legislation requiring TT to be banned or sold which was upheld by the United States Supreme Court on January 19, 2025.23 However, recent presidential executive orders have been signed to keep TT operating for now.24,25 Regardless of the fate of TT in the United States, the dominance of short video content is indisputable and inevitably other short video social media alternatives will increase in popularity or a new, similar social media platform will emerge. Promotional content, diet and supplements, and patient experience were the most common themes among all fibroid-related social media posts, consistent with previous findings on IG from Sinha et al.3 Overall, there is little evidence for herbal or other alternative treatments for uterine fibroids,26 and existence of this type of information on social media especially when presented in a relatable and engaging way may be harmful to patients. When evidence-based fibroid treatments were discussed, surgery was the most common however there was higher emphasis on laparotomy over minimally invasive techniques. It is well known that minimally invasive approaches to fibroid management result in lower complication rates, improved postoperative pain and faster recovery when compared to open approaches.27,28 To support patients seeking information about fibroids, there is a need for more reliable and engaging social media content that both corrects misinformation and highlights the benefits of evidence-based, minimally invasive treatment options. The fact that little information exists on social media regarding minimally invasive surgical management of fibroids is a significant shortcoming and underscores a missed opportunity for authoritative voices to improve the quality and breadth of fibroid-related content online.

As we further contemplate our role as clinicians in the social media sphere, it is imperative that we look to create posts and videos that help educate patients about appropriate and effective fibroid treatment options in a relatable way. Many patients with uterine fibroids turn to social media for medical information when seeking further knowledge about their diagnosis and treatment options. To our knowledge, this study is the first comprehensive examination of social media content related to uterine fibroids and greatly contributes to the provider’s understanding of what type and quality of content patients consume on social media. We used validated data collection methods such as the DISCERN scale and PEMAT, which are replicable and can be implemented in other settings. Limitations of our study include its design as an exploratory descriptive study and that social media is constantly changing due to informational algorithms promoting more popular posts and tailoring content to the individual user. Furthermore, controversial or emotional posts may garner more engagement than objective content. Only publicly available posts were analyzed and may not be entirely representative of all fibroid-related social media content. Directions for future research might include survey studies or focus groups examining the extent patients use social media for fibroid-related medical information and the type of content they value. Our study design can be expanded to other social media websites. YouTube and Reddit were both considerations for our study but were excluded due to the long duration of some videos and the “bulletin board” format of the platform, respectively. Healthcare providers and organizations who disseminate social media content to our patients and the public at large should not only make content engaging and entertaining, but also accurate, informational, and patient-centered. This is especially important regarding fibroid treatment options, particularly minimally invasive gynecologic surgery, for which information quantity and quality is especially poor. Footnotes Conflict of interests: none. Funding sources: none. Disclosure: none.

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