Grutman Aurora J, Perelmuter Sara, Perez Abigail, Meurer Janine, Contractor Monica, Mathews Eva, Shearer Katie, Burnett Lindsey A, Uloko Maria
Johns Hopkins School of Medicine, Baltimore, MD, United States.
Weill Cornell Medical College, New York, NY, United States.
JMIR Infodemiology. 2025 Mar 6;5:e63072. doi: 10.2196/63072.
Vulvodynia is a chronic vulvar pain condition affecting up to 25% of the US population. However, diagnosis and effective treatment remain elusive. Many individuals with vulvodynia face stigma and medical uncertainty, leading them to seek information and web-based support. Reddit is a popular social media platform where patients share health concerns and experiences. The anonymity and accessibility of this platform make it a valuable source of real-world patient perspectives that are often overlooked in clinical settings.
This study evaluated Reddit content related to vulvodynia to explore how individuals with vulvodynia describe their symptoms, treatments, and personal experiences.
The subreddits "r/vulvodynia" and "r/vestibulodynia" were selected for analysis in May 2023. Threads were sorted from the most popular to least popular, with "popularity" measured by upvotes. Opening threads from the top 70 posts in each subreddit were extracted and analyzed using inductive qualitative analysis to identify themes and sentiment analysis to evaluate attitudes.
In May 2023, the "r/vulvodynia" and "r/vestibulodynia" subreddits had a total of 7930 members (7245 and 685 members, respectively). Out of 140 analyzed threads, 77 (55%) contained negative attitudes. A total of 50 (35.7%) threads were seeking information or advice and 90 (64.3%) included some form of peer support. Inductive thematic analysis identified 6 core themes: symptoms (n=86, 61.4%), treatments (n=83, 59.3%), sexuality (n=47, 33.6%), erasure or disbelief (n=38, 27.1%), representation or media (n=17, 12.1%), and humor (n=15, 10.7%). Threads that discussed treatments (48/83, 57.8%), sexual experiences (25/47, 53.2%), and representation (14/17, 82.4%) had the highest proportions of positive attitudes, while threads that touched on erasure (21/38, 55.3%), symptoms (51/86, 59.3%), and humor (12/15, 80%), had the highest proportion of negative attitudes. A multivariable logistic regression of valence on the themes revealed that posts referring to treatments (odds ratio 12.5, 95% CI 3.7-42.2; P<.001) or representation (odds ratio 21.2, 95% CI 4.2-106.0; P<.001) were associated with significantly increased odds of positive valence. Furthermore, it was noted that 3 of the 5 most frequently discussed treatments aligned with clinical guidelines from the American College of Obstetricians and Gynecologists, American Urological Association, and International Society for the Study of Vulvovaginal Disease. Despite this alignment, threads frequently mentioned alternative remedies and frustration with medical professionals related to diagnostic delays and perceived lack of understanding.
This is the first study of Reddit discussions about vulvodynia. Findings suggest a gap between patient experiences and provider understanding, underscoring the need for improved patient education and greater clinician awareness of psychosocial factors in vulvodynia care. While limited by its sample size and lack of demographic data, this study highlights how web-based communities can help identify ways health care providers can better meet patient needs and how patients mutually support each other.
外阴痛是一种慢性外阴疼痛疾病，影响着多达25%的美国人口。然而，诊断和有效治疗仍然难以捉摸。许多外阴痛患者面临耻辱感和医疗不确定性，这导致他们寻求信息和基于网络的支持。Reddit是一个受欢迎的社交媒体平台，患者在上面分享健康问题和经历。这个平台的匿名性和可及性使其成为现实世界中患者观点的宝贵来源，而这些观点在临床环境中常常被忽视。
本研究评估了Reddit上与外阴痛相关的内容，以探讨外阴痛患者如何描述他们的症状、治疗方法和个人经历。
2023年5月选择了子版块“r/vulvodynia”和“r/vestibulodynia”进行分析。帖子按照点赞数从最受欢迎到最不受欢迎进行排序。从每个子版块的前70个热门帖子中提取开篇帖子，并使用归纳定性分析来确定主题，使用情感分析来评估态度。
2023年5月，“r/vulvodynia”和“r/vestibulodynia”子版块共有7930名成员（分别为7245名和685名）。在140个分析的帖子中，77个（55%）包含负面态度。共有50个（35.7%）帖子在寻求信息或建议，90个（64.3%）帖子包含某种形式的同伴支持。归纳主题分析确定了6个核心主题：症状（n = 86，61.4%）、治疗（n = 83，59.3%）、性（n = 47，33.6%）、被忽视或不被相信（n = 38，27.1%）、代表性或媒体（n = 17，12.1%）以及幽默（n = 15，10.7%）。讨论治疗（48/83，57.8%）、性经历（25/47，53.2%）和代表性（14/17，82.4%）的帖子中积极态度的比例最高，而涉及被忽视（21/38，55.3%）、症状（51/86，59.3%）和幽默（12/15，80%）的帖子中消极态度的比例最高。对这些主题的情感进行多变量逻辑回归分析显示，提及治疗（优势比12.5，95%置信区间3.7 - 42.2；P <.001）或代表性（优势比21.2，95%置信区间4.2 - 106.0；P <.001）的帖子与积极情感的显著增加相关。此外，还注意到5种最常讨论的治疗方法中有3种与美国妇产科医师学会、美国泌尿外科学会和国际外阴阴道疾病研究学会的临床指南一致。尽管有这种一致性，但帖子中经常提到替代疗法以及对医疗专业人员在诊断延迟和缺乏理解方面的不满。
这是第一项关于Reddit上外阴痛讨论的研究。研究结果表明患者经历与提供者理解之间存在差距，强调了改善患者教育以及提高临床医生对外阴痛护理中心理社会因素认识的必要性。虽然本研究受样本量和缺乏人口统计学数据的限制，但它突出了基于网络的社区如何有助于确定医疗保健提供者更好地满足患者需求的方法，以及患者如何相互支持。
