Research on the experiences of patients with endometriosis highlights several areas of endometriosis care that require improvement. Medical treatments should be more holistic, taking into consideration the social, emotional, and psychological costs of endometriosis for patients and their loved ones [1-3]. Health care providers should improve their communication to validate patients’ concerns, meet their informational needs, and avoid misunderstandings [4-6]. Because loved ones are also affected by this condition, they should receive education and training on it from health care professionals [1,7-9].

Prior work identifies a lack of large-scale mixed methods analyses on patient experiences and online communities, which could further support these findings [1,10]. Existing qualitative research on patient experiences has been limited to small patient samples. Previous quantitative analyses, though larger in scale, are limited to ontologies that are defined by researchers rather than those inferred from patient narratives [1,10,11].

This study fills this gap by providing a large-scale analysis of user behavior in 2 endometriosis online health communities (OHCs), r/Endo and r/endometriosis, on the social media platform Reddit (Reddit, Inc). Using natural language processing and qualitative analysis, we identified and mapped the associations between a post’s subject matter (“topics”), the people and relationships (“personas”) mentioned, and the type of support the post seeks (“intent”). We investigated 2 research questions (RQs):

Most studies on the effects of endometriosis on quality of life fail to investigate the impact of the condition on loved ones and informal caregivers as well as adolescents [1]. Instead, they only include people with an endometriosis diagnosis within the research population [5,6,12-14]. Given the long average delay between symptom onset and diagnosis [2,4], many adolescents with endometriosis are missed by this research.

Studying r/Endo and r/endometriosis, we discovered the unmet needs of these hard-to-reach groups. The endometriosis OHCs of interest in this study are open and accessible to anyone regardless of whether they have a diagnosis or not. As a result, numerous members self-identify as belonging to populations that have been missed by endometriosis research, that is, people who have yet to receive a diagnosis, adolescents, and loved ones of people with a diagnosis. Moreover, due to the pseudonymity afforded by the platforms, users feel more comfortable discussing needs that they might not have the time or courage to address in clinical settings.

Researchers have also highlighted OHCs’ role in the improvement of health care [15,16]. An existing study of a polycystic ovary syndrome (PCOS) subreddit found concordance between trends from laboratory results posted to the OHC and trends from clinical research. This indicates that, although OHCs often include patients that are typically excluded from clinical trials (such as those with multiple conditions), studying these communities is useful to understand patient populations [17]. Indeed, content analysis of these communities reveals patterns across patients’ experiences of care and symptoms [18-21], and OHC members’ expertise in providing support to peers could be leveraged to deliver health care interventions and programs [16,22-24].

Endometriosis is a chronic condition that affects 10% of people with a uterus. It is characterized by the presence of uterine lining tissue outside of the uterus [2]. This condition causes a range of painful, persistent, and life-altering symptoms, including, but not limited to, chronic pelvic pain, painful menstruation, constipation, painful urination, painful sexual intercourse, and infertility. Its estimated annual economic impact exceeds US $60 billion in direct treatment costs and lost productivity in the United States alone [25]. There is no cure for endometriosis; therefore, treatment focuses on symptom management and relief [2,26,27]. Treatments might include hormonal therapy, surgical removal of endometriosis lesions, and fertility treatment. However, such therapies cause numerous side effects and rarely provide long-term relief to patients [26].

Due to the absence of condition-specific symptoms and biomarkers, the normalization of menstrual pain, the need for surgery to make a diagnosis, and the lack of knowledge about the condition by both the public and clinicians, the average time until diagnosis is estimated to be between 6 and 11 years, depending on the health care system of reference [4,28,29]. A confirmed diagnosis can only be reached through laparoscopic excision of endometriosis tissue, an invasive surgical procedure [30].

Patients with endometriosis face numerous difficulties during their health care journeys. They not only struggle to find information but also encounter negative attitudes from physicians [5,12,31]. Patients’ concerns are often dismissed as “just period pain” by health care providers [13]. Negative attitudes seem to derive from physicians’ own discomfort with unexplained symptoms [32] as well as from the continued presence of hysteria discourse and androcentric views in medical literature [33].

Because of these interconnected factors, endometriosis has dire impacts on patients’ quality of life [34]. This condition forces people to leave their education and employment and opt out of social events and everyday activities. Due to sexual pain and infertility, patients may feel inadequate as partners and fear abandonment [1].

Patients with endometriosis require support from partners, family members, and friends to overcome these struggles and receive a diagnosis [3,29]. Self-care practices are time-consuming and labor-intensive for both patients and their loved ones. As patients focus on following complex treatment regimens and become expert in their own care [6,35-37], a wide range of other responsibilities falls onto their partners and family members. These responsibilities can include financial and housekeeping duties, helping to navigate the health care system, and relaying medical information, among others [38-41].

OHCs are groups of individuals who come together on an internet-based platform (eg, social media, website, or forum) to discuss general or condition-specific medical topics. Members may be patients, medical professionals, informal caregivers, patients’ loved ones, or members of the general public [28,29].

OHCs have been shown to provide support to users who experience dissatisfaction or constrained access to medical care, limited social support, or the absence of a local community of people with the same condition [38,42]. Indeed, some members join OHCs after feeling alienated from the medical community or becoming distrustful of medical knowledge and care [43,44]. Others join to learn about alternative treatment options, understand their test results, or to advocate for better awareness of their condition [42,45,46].

As these communities allow varying levels of pseudonymity and anonymity, users with stigmatic and chronic conditions can share intimate or stigmatized information with reduced fear of social repercussions [47,48]. People with chronic conditions often use OHCs to make sense of their experiences and receive validation [49,50].

Studies of OHCs show that an individual member’s support needs as well as the support they provide may change over time and with age [51-53]. Earlier work on support matching suggests that different types of support may be more appropriate for certain needs [54]. A study of a breast cancer OHC found that the presence of emotional or informational support increased the original poster’s satisfaction, though users expressed less satisfaction if they received emotional support when seeking informational support [55]. A separate study on a mental health OHC found that support matching positively predicted satisfaction, but there was significant variance across users [52].

Participating in OHCs empowers members as they become better informed about their health concerns, learn to manage their condition, and gain strategies for communicating with health care providers [22,23,31,43,53,56-58]. In many cases, participants ultimately feel less isolated. Contrary to common belief, Huh [59] found that OHC members do not share misinformation, and they commonly invite peers to consult a provider for medical advice. Other studies of OHCs confirm the beneficial effects of engaging in these communities, showing that members gradually express more positive emotions than negative ones with sustained participation [60,61]. One study of an addiction recovery OHC found that engagement in the community correlates positively with recovery [62].

Due to the significant impacts of the condition on patients’ lives, people with endometriosis often turn to both offline and online communities for help. The former generally consist of dedicated in-person meetings and activities, and access depends on proximity [63,64]. The latter exist in a variety of forms, such as blogs, mailing lists, Facebook pages, and Instagram accounts; their activities depend on the specific platform [43,49].

Whelan [65] found that both an offline and an online endometriosis group are epistemic communities. As members shared their stories and interacted with peers, they built a new epistemology in which patient experiences became valid forms of knowledge.

Previous research also focuses on the kinds of support and content shared in endometriosis online communities. In a study of Facebook pages for people with endometriosis, Towne et al [11] showed that 48% of the posts provided emotional support, while educational posts made up 21% of the total posts. Furthermore, they found that 94% of the educational posts shared accurate information. By contrast, Metzler et al [10] found that most posts on Facebook and Instagram accounts about endometriosis offered inspiration or support, awareness about the disease, or personal information. Followers mostly engaged with posts that are humorous, generate awareness, and contain personal content. Finally, Shoebotham and Coulson [66] demonstrated that several therapeutic benefits are related to joining endometriosis online support groups. They found that members felt reassured and empowered while improving their knowledge of endometriosis.

Endometriosis OHCs exist on many platforms in many forms [43,49]. We studied r/Endo and r/endometriosis, two thriving forums about endometriosis on Reddit. Reddit is a social media platform with 93 million daily active users as of September 2024. It is a collection of forums (called subreddits), which users can choose to join, and they may participate as posters or commenters. We focused on Reddit because its OHCs have been thoroughly studied, and previous analyses have demonstrated their potential for understanding patient experiences and improving care [15,17,21]. Furthermore, both r/Endo and r/endometriosis featured high membership and participation numbers (Table 1) as well showed promise of continued growth (Table 2).

We collected posts and comments from r/Endo and r/endometriosis from their inception (January 2012 and November 2014, respectively) to December 2021 using the Pushshift Reddit application programming interface (API). The custom Python code used for the data collection process and subsequent analysis are available for reference.

After reading the posts, examining general statistics of the subreddits (Table 1), and comparing their community-specific languages using the “fightin’ words” method by Monroe et al [67], we found that the 2 communities shared sufficient similarities to justify treating them as a single dataset (Multimedia Appendix 1). Members used both subreddits to ask questions about endometriosis, share experiences, and seek advice, and this similarity was reflected in their high vocabulary overlap. Existing differences in word use were relatively minor and not clearly relevant to our RQs.

People with endometriosis have historically been failed by research and medical institutions. Similar to other gendered conditions, considering its severity, economic impact, and the number of people diagnosed with it, endometriosis research is greatly underfunded [68]. There is a persistent imbalance between the high percentage of people with endometriosis and the low number of endometriosis experts [2]. Patients deal with ongoing disbelief, invalidation, or trivialization of their symptoms, even from members of the medical community [12,31,33].

Though data from r/Endo and r/endometriosis are public, members of online communities do not necessarily anticipate that their posts and comments could be used by academic researchers [69]. By collecting, analyzing, and publishing research about these data, we extracted the data from its intended audience and brought it to a new, unanticipated audience [70]. Following previous examples of handling sensitive, health-related data [18,45,71], we obscured the source data to protect members from being identified in relation to their posts or comments. Obfuscation was performed in two ways as follows: (1) throughout this paper, we paraphrased any quoted material and (2) we did not rerelease the underlying text data themselves. Any quoted material in the paper underwent rewording at the sentence level to make it less directly searchable, but we retained as much content of the original version as possible. We released all code and our codebooks so that other researchers may replicate our results on future versions of the OHC, subject to users’ later in situ modifications or deletions of their contributions.

Because data from Reddit are publicly available, our study was not considered to be human participant research and was exempt from a review by Cornell's institutional review board (IRB0145192). Still, we contacted the moderators of the 2 OHCs to inform them that we were conducting this study.

Using topic modeling we find that OHCs are spaces dedicated to narrations of users’ health care pathways, directions on how to find care and manage symptoms, as well as expressions of validation between peers regarding their health concerns.

Particularly, the most discussed topics in the 2 communities are medical stories, medical appointments, sharing symptoms, menstruation, and empathy. These results extend previous findings from small-scale, qualitative research collecting experiences of patients with endometriosis. These include evidence of the benefits of sharing one’s story within a community [49,65], the need for assistance with treatment regimens and appointments [14,31], the uncertainty experienced by patients related to their symptomatology [13], as well as the value of receiving validation regarding health concerns and symptoms [8].

An existing study of a PCOS subreddit has also found concordance between the OHC user population and research-identified patient cohorts [17]. Although the PCOS OHC includes patients that are typically excluded from clinical trials (such as those with multiple conditions), trends found in laboratory test results posted to the community are consistent with clinically reported results.

Our results also align with studies on OHCs, showing that OHC users become better at communicating with their providers and managing their conditions as well as feel less isolated [23,43,49,50,56-58].

We find that posts mention the endometriosis OHCs more than they mention medical professionals, highlighting the vital role that these groups play in the users’ health care decisions, and most of the posts are written to seek experiential advice. Venting is the least common of our intent categories, but venting still occurs in a substantial fraction (10%) of the posts.

We find that users need assistance with accessing and preparing for medical visits as well as navigating fertility options. To meet these needs, patients currently turn to the OHCs, their partners, and their family. Interestingly, members of the OHCs seldom associate medical professionals and providers with empathy.

We also find that patients’ relationships with their partners and family members can be affected by their condition. Users share how physical manifestations of endometriosis, such as infertility, alter their life goals and complicate personal relationships. At the same time, partners and family members play a vital role by serving as informal caregivers. They even use the OHCs for advice in creating a strong support system.

Furthermore, while users seek experiential knowledge regarding treatments and health care processes, they also wish to vent and establish an emotional connection about the life-altering aspects of the condition.

These results align with previous research on the areas of endometriosis care that need improvement, including nonholistic treatments [1-3], unsatisfactory patient–health care provider communication [5,9,18], and the lack of training or educational resources for patients’ loved ones [1,7-9].

The potential implications for clinical practice of this work are significant. Physicians who treat endometriosis would benefit from knowing the depth and breadth of medical information shared on these forums. Patients belonging to such communities often have a higher baseline level of knowledge about endometriosis and will benefit from more nuanced discussion of symptoms and treatment options. In addition, if physicians are aware of the overall supportive nature of these communities, they may be able to recommend them to patients who feel isolated with their diagnosis.

On a wider policy level, this work highlights the need for better education about endometriosis in medical schools and obstetrics and gynecology residency training programs. With improved awareness of the condition, it is less likely that communications with patients would be perceived as dismissive. In addition, this work calls attention to the need for more physicians with expertise in endometriosis, as highlighted by the popularity of posts on finding endometriosis specialists.

Limitations of the study include its sole focus on Reddit, which may exclude patients who prefer receiving support on other social media platforms or through offline groups. Our focus on 2 primarily English-language subreddits may not capture the experience of non–English-speaking users.

In addition, we cannot assume that every post describes endometriosis, as many users rely on the community for information before an official endometriosis diagnosis. While this provides us with valuable information about the prediagnosis experience, it is possible that users post, in some instances, about medical issues that are not endometriosis.

The study spans nearly a decade, but it does not explicitly analyze how trends in discussion topics or user needs evolve over time (eg, the period before the COVID-19 pandemic vs the period after the COVID-19 pandemic). Future work could perform temporal analyses designed to detect how external factors, such as a pandemic or major developments in endometriosis research, change discussion topics and user needs in the community.

In addition, while we learn vital information about the endometriosis experience, there is a more complex picture of how endometriosis is impacted by social conditions. Future work could analyze how social determinants (eg, employment status and cultural stigma) influence the endometriosis experience.

In this study, we conducted a large-scale analysis of user needs in 2 endometriosis OHCs, r/Endo and r/endometriosis. We found that these communities provide members with a space where they can discuss care pathways, learn to manage symptoms, and receive validation. Our results point to the need for greater empathy within clinical settings, easier access to appointments, more information on health care processes, and further support for patients’ loved ones.

Our study demonstrates the value of quantitative analyses of OHCs. OHCs provide very large datasets on patient experiences. In this work, we analyzed hundreds of thousands of posts and comments by tens of thousands of users. To the best of our knowledge, the sample size of this study is one order of magnitude larger than the sample size of any other study on the needs and experiences of patients with endometriosis. Therefore, our results reinforce and extend findings from small-scale studies about patient experiences and provide insights into hard-to-reach groups. Finally, we believe that studies of OHCs can help design interventions to improve care, as argued in previous studies [15,17,18,45].