by Adya Patil , Hayden Floyd, and Taylor Bourque
From the authors
INTRODUCTION
Endometriosis is a chronic disease where endometrium tissue grows outside of the uterus—usually on the pelvic organs like ovaries and fallopian tubes. Symptoms often include severe pelvic pain, pain during or after sex, heavy periods, infertility, fatigue, nausea, and many other painful experiences. Endometriosis affects nearly 10% of women and girls of reproductive age worldwide, yet there is still little known about this disease. For example, the only way to get a formal diagnosis is through an invasive laparoscopic surgery; women are obliged to undergo a very invasive surgery to receive a diagnosis. The lack of knowledge surrounding endometriosis is reflective of how women are ill-considered in clinical research and not taken seriously in the healthcare system overall.
Endometriosis treatment and diagnosis exemplifies how many health disparities intersect between varying racial and gender identities. This paper examines the barriers to endometriosis diagnosis and experience through a multi-pronged approach: we will examine the social stigma that dissuades women from pursuing an endometriosis diagnosis stemming from the shame surrounding women’s health. Additionally, we will examine how a lack of diversity and participation in studies compounds with the lack of funding in reproductive health, which limits treatment options. This paper dissects how the medical field fails women at several different levels by increasing barriers to adequate care.
The Burden of Endometriosis
Endometriosis is the largest gynaecological issue impacting women. It is marked by the growth of uterine-like tissue outside of the uterus. This causes intense pelvic pain and menstrual cramping. Endometriosis is grossly under-researched when considering its prevalence, affecting 1 in 10 women of reproductive age, but also when considering its devastating impacts. The people impacted by endometriosis, mainly women, face chronic pain and elevated infertility risks. This chronic pain is disabling, yet the barriers to diagnosing endometriosis makes it difficult for a majority of people suffering from endometriosis-related pain to receive proper accommodation. A research group investigated the impacts of endometriosis on quality of life, and reported elevated instances of depression and mental health issues in those who suffer from endometriosis (Warzecha et al., 2020). This is likely a result of chronic pain, and bearing the weight of an overlooked and stigmatized disease. The physical symptoms of endometriosis are complex, and can affect all aspects of life. These include intense menstrual cramping, back pain, pain during intercourse, and painful defecation (Warzecha et al., 2020).
While these studies are important and highlight the weight of endometriosis, we wanted to directly communicate with people with this disease to most accurately portray its impact. To aid our research, we conducted separate interviews with two college students who have endometriosis. They explained how they navigate this disease and provided insight to how it impacts their lives. They described very similar presentations of the disease: severe, immobilizing pain and severe vomiting. While endometriosis is a chronic condition, their symptoms are presented only before and after menstruating. This makes them similar to period cramps, however, differing greatly in severity. One interviewee described being brought to the emergency room the night before she menstruated for the first time, as the amount of pain she was in presented as appendicitis. She discovered soon after that her pain was actually menstrual cramping, but its intensity was abnormal. This sharp pain while menstruating is a common presentation of endometriosis, described as immobilizing by both interviewees. They both indicated that during this phase of an endometriosis flare-up, they are unable to keep anything down; including pain medications. During this time of severe pain, they are unable to function and keep up with their regular commitments. Despite the pain they experience, they both noted that the anxiety leading up to their period was more unbearable than the pain itself.
The pain associated with endometriosis is complex, yet universal; it is overlooked, yet its impact is impossible to ignore. The lack of funding toward endometriosis research and relief is an injustice as it continues to devastate the bodies and well-being of the people living with it.
Why are we not researching (anymore)?
Considering the devastating nature of endometriosis, we beg the question – why are we not researching? This question is crucial, but in answering it we must unravel the history of gynaecological research. We absolutely want to know why we are not researching, but the historical precedent of gynaecological research clouds the field. We must first dissect the histories of gynecology through past research to understand the racism and abuse behind what we know today.
Dr. James Marion Sims, grossly titled the Father of Modern Gynecology, was an American physician who developed several surgical techniques and medical instruments: the speculum, sims position, and the sigmoid catheter. However, the experiments that led to these developments between 1846 and 1849 were horrific. Sims originally was uninterested in treating female patients, though a switch flipped when “he was asked to help an enslaved woman who had fallen off a horse and was experiencing back and pelvic discomfort… Sims understood he had to check her vagina directly in order to treat her properly. Leaning forward, he put her on all fours and used his fingers to improve his vision.” (Shende, Priyal et al., 2024). This examination would later be performed by bending the handle of a pewter spoon – what would become the modern speculum. Other devices would later come to fruition as conditions like vesicovaginal fistula (VVF) arose, but the way in which they did is utterly disgusting.
VVF was common amongst enslaved women as they were forced to bear children repeatedly without medical care for the sake of increasing slaveholder wealth. Because of this, Sims found a deep curiosity in this condition and wanted to find a cure. He built a small hospital on his property and informed fellow slaveholders of his prospective work and cure. Enslaved women with VVF were leased to Sims for him to fix them; “their ability to labor and procreate was often considered the only thing that made these enslaved women valuable, so Sims ‘patched them up’ in order to keep them working for their owners.” (Shende, Priyal et al., 2024). Under the racist belief that Black women did not feel pain like white women, Sims’ patients were experimented on without anesthesia, often in front of large groups of male medical students. Countless surgeries were performed on each woman despite little time in between each procedure. These women went through unimaginable pain, humiliation, mutilation, and trauma. After operating on one particular woman over 30 times, a surgical cure for VVF was found. Only three of twelve women who Sims experimented on survived.
So yes, our question of why are we not researching anymore? still stands and needs answers, but it is important that we understand what research once was, who was exploited, and what gynecological history holds.
Research Gaps
Today, we find that endometriosis is one of the most underfunded and under-researched women’s health conditions, despite the approximate “11% of women (and people assigned female at birth [AFAB])” that are affected worldwide (Ellis, Katherine et al., 2022). In 2022, endometriosis research accounted for just 0.083% of the national health care budget, with only 1,042 articles published with an even split between diagnosis and treatment findings (Endometriosis Foundation of America, 2022). To contextualize just how stark the funding disparity is, 0.083% of funding equates to approximately 16 million dollars, or about $12 per affected patient. By comparison, Crohn’s disease, which affects far fewer individuals, received 90 million dollars of funding, or $130 per patient (Frontiers in Global Women’s
Health, 2022). Diabetes research received over 1.1 billion dollars that same year (2022) —more than 40 times the funding allocated to endometriosis, despite a comparable prevalence among women (Women’s eNews, 2025). Even prostate cancer, which affects men at roughly a similar rate to which endometriosis affects women, received more than 11 times as much NIH funding in 2024 (Women’s eNews, 2025). These numbers are a direct reflection of whose pain our society has deemed worth investigating. This is extremely frustrating, but it would be careless to disregard the research that is happening now—there are physicians and researchers who care, just not enough. This notion illuminates the lack of awareness surrounding endometriosis and the slippery parameters for diagnosis. After all, AFAB specific health issues have historically received less funding as opposed to diseases that also affect men—likely due to the normalization of women’s pain in and outside of menstrual health, and the dismissal of symptoms as routine discomfort.
The lack of research on this disease ultimately leads to untrained physicians in this field who are likely to dismiss hallmark endometriosis symptoms, and blame them on regular menstrual pain. Additionally, there are very limited specialists that work on endometriosis particularly. Women with endometriosis are told that pelvic pain is normal, and likely just an intense period; even in severe cases. Within this conversation, even if there is a physician willing to listen to someone’s concerns, the likelihood that they will be diagnosed is very low. It typically takes between four and eleven years for a correct diagnosis of endometriosis, and “as many as six out of every 10 cases of endometriosis remain undiagnosed” (Berg, 2024). Within that, these delays are not experienced equally across race: BJOG, an International Journal of Obstetrics and Gynecology, found that Black women are approximately half as likely to be diagnosed with endometriosis as compared to their white counterparts. The diagnostic delay can even be stretched to twice the already vast average (AJMC, 2023). This is absolutely compounded by the long standing false clinical assumption that endometriosis is rare among non-white populations, a misconception rooted in lack of representation in research studies.
Early endometriosis literature often drew from patient populations that were overwhelmingly white and affluent, which framed endometriosis as a condition almost exclusive to said demographic. Black women were simultaneously rejected and excluded from studies, being subjected to the medical myth that they experience less pain than white counterparts (Hoffman et al., 2016). This ideology meant that physicians were less likely to investigate Black women’s symptoms seriously, and therefore unlikely to diagnose endometriosis at all. And yet, for those who were/are able to clear the impossible diagnostic hurdle, the challenges of the medical system do not end there. The combination of this neglect (especially affecting women of color) and requiring an invasive laparoscopic surgery to receive an official diagnosis of endometriosis is infuriating. It creates a devastating cycle: without diagnosis, patients cannot access targeted treatments—without enough diagnosed patients in data assays, funding will remain low. Without funding, the necessary research to develop non-invasive diagnostic tools and effective therapies remains stalled. This means that patients bear the weight of navigating a fragmented medical system, often at the cost of financial and emotional needs. Patients who do not have the financial means to seek out specialists, pursue second opinions, or sustain years of uncompensated medical leave fall under the economic burden of having this disease.
Progress in this system necessitates investing in the infrastructure that is needed to close gaps in endometriosis research and care that has continuously made women’s pain easy to ignore. It means demanding that research reflects the full diversity of people who live with this disease. It means training physicians further than simply textbook symptoms of endometriosis—but also in the cultural and structural biases that cause overlook. It means recognizing that the underfunding of endometriosis research is not just passive oversight, but an active, ongoing choice that costs millions of women their health, fertility, and quality of life.
Stigma Surrounding Endometriosis
Through a lot of the interviews conducted, the social stigma surrounding endometriosis stems from the lack of understanding of what the disease was. The interviewees noted that peers, family and physicians alike all approached discussions surrounding endometriosis with ranging attitudes; from blatant dismissal of their symptoms to ignorance surrounding the disease. One interviewee noted that she believes endometriosis was a “trigger word” for many physicians, striking feelings of incompetence or ambivalence towards the mysterious disease. She noted that after being diagnosed with endometriosis and switching primary care physicians, her new doctor had a viscerally negative reaction to seeing the disease in her chart, pronouncing that she’d prefer not to use the term“endometriosis” as it often carries a “negative connotation.” She instead opted to reword the diagnosis on her chart to menstrual pain. Another interviewee noted that after expressing the likelihood of her having endometriosis to healthcare professionals, it was often suggested she get pregnant to alleviate her symptoms. It is disturbing the sheer incompetence that is prevalent amongst most medical professionals when diagnosing and treating endometriosis. The unwarranted and demeaning comments patients receive is yet another barrier to receiving a diagnosis. Both interviewees also noted that their symptoms actively influence several spheres of their lives, from what classes to take, extracurriculars, and even friendships. One interviewee noted that she meets her professors at the beginning of the semester to communicate that she may miss class without notice because of the sheer pain and immobility her symptoms cause. She often has to educate them as to what having endometriosis entails. Another noted that when she told her track and field coaches in high school about her condition, they said “There’s 20 other girls on this team that train while on their periods; why can’t you?”
Several studies have noted that the social stigma of endometriosis only compounds the physically debilitating symptoms; 50-56% of women with endometriosis have reported that the condition has affected intimate relationships (Cox et al., 2003). A study conducted in the UK noted that 62% of women with endometriosis delayed seeking medical care due to a fear of being dismissed, invalidated or embarrassed. 57% of 16 to 34 year old women felt concern over requesting sick leave to their employers due to endometriosis. (Endometriosis UK.)
Furthermore, of the already limited research on experiencing endometriosis, even less research is available regarding women of color’s experiences with endometriosis stigma. It is much harder for WOC to receive diagnoses due to a lack of research in non-white women’s endometriosis symptoms and prevalence. This barrier is compounded by stereotypes regarding pain tolerance and women of color—lengthening the process to receive a diagnosis. Furthermore, there are other prevalent uterine health conditions in women of color that may obscure endometriosis symptoms, such as PCOS or fibroids. Additionally, Black women tend to undergo more invasive surgeries than white women. Black patients under the age of 20 are three times more likely to undergo oophorectomies than their white counterparts, and this fact alone lends to the high major perioperative morbidity rates that Black women face (Jackman et al., 2025). Endometriosis diagnosis and treatment are both hindered by this stigma, which has many misogynistic and racist implications.
Lack of representation
There is another barrier that prevents women from receiving adequate reproductive health care; and it is a lot more foundational than expected. As one of our interviewees mentioned: “I was hesitant to undergo the intense and invasive nature of getting diagnosed with endometriosis because even if I received the diagnosis, the only things that would be prescribed to me would be Tylenol or birth control.” These lack of options are largely due to insufficient and poorly conducted research into endometriosis care. The etiology of endometriosis is very unknown, with many physicians arguing that endometriosis should be classified as an “amalgamation of disorders” due to the wide range of symptoms and lesion types the disorder inhabits (As-Sanie et al., 2019). Many women experiencing endometriosis are comorbid with other autoimmune or chronic pain disorders; a study demonstrated that 95% of women who have been diagnosed with endometriosis reported having one or more disorders such as migraines, depression, anxiety, IBS, ovarian cysts, and more (As-Sanie et al., 2019). Endometriosis lesions which are used to diagnose the disease can range from superficial peritoneal endometriosis to deep infiltrating endometriosis. Furthermore, the laundry list of symptoms that are correlated with endometriosis align with several other disorders. For example, pelvic pain is one of the most common symptoms of endometriosis yet is characteristic of IBS, pelvic inflammatory diseases, uterine fibroids, fibromyalgia, and many more. The fact that there is no consolidated list of symptoms that are uniquely characteristic of endometriosis speaks to the lack of understanding of the disorder.
Further, endometriosis related costs rack up to $69.4 billion a year in excess health expenditures with $12,118 per patient. In fact, healthcare costs for women with endometriosis are 3 times higher compared to patients who don’t have endometriosis; this statistic holds true from 5 years before and after diagnosis (Kirk et al., 2024). The annual health care costs for endometriosis in referral centers are similar to those of diabetes, Crohn’s disease and rheumatoid arthritis. Yet, despite the prevalence and costliness of the disease, it is severely underfunded and unknown. This lack of funding leads directly to a lack of therapeutic care for endometriosis patients. Most of the therapies available to treat endometriosis symptoms are for pain management, of which 11-19% of patients report no improvement with pain symptoms while undergoing medical therapy. Additionally, 5-59% report some degree of persistent pain near the end of treatment (As-Sanie et al., 2019). The broad range of percentages are due to low participation rates in endometriosis studies, and the strong barriers in place to even receive a diagnosis. Many of the current therapeutics that target combined hormonal therapies cannot be used on pregnant patients, which forces pregnant people to choose between experiencing debilitating pain or compromising the pregnancy. The disease recurrence rates range from 30-50%, with up to 55% of patients undergoing another laparoscopic surgery 7 years after diagnosis (As-Sanie et al., 2019).
The fact that there are very limited and ineffective therapeutics available to treat endometriosis stems from a larger issue within research: trials are not generalizable. As a case study, PreP, the leading treatment for HIV-1 was never tested on cis-gender women or transgender men, and thus AFAB HIV patients cannot take all PreP medications. There are only 2 PreP medications (Truvada and Apretude) that are safe for AFAB patients or people who have receptive vaginal sex. Further, ignoring the racial and gender diversity in the participants of clinical trials has lasting impacts on public health. For example, the U.S. Preventive Service Task Force (USPSTF) makes evidence-based recommendations for clinical preventative services, and their recommendations influence which services are covered by insurance. Lack of representative studies on screening for cancer or cardiometabolic disease lead to ineffective early screening in populations where cardiovascular disease and diabetes are more prevalent, or develop at earlier ages. It was reported that the USPSTF was “‘unable to make a separate, specific recommendation on colorectal cancer screening in Black adults’ because of ‘limited available empirical evidence’ despite Black adults having the highest rates of incidence and mortality from colorectal cancer compared with other racial/ethnic groups” (National Academies of Sciences, Engineering, and Medicine, 2021). Clinical trials are a crucial method of accessing most novel forms of therapeutics for advanced or chronic diseases, for which overlooking marginalized groups such as endometriosis patients serves as a huge disadvantage.
There are many new exciting avenues for screening for endometriosis which are much less invasive and more accessible than current diagnostic tools. For example, tracking biomarkers such as microRNAs from blood tests have shown to be accurate predictors of endometriosis development. Further, hormone therapy targeting these miRNA serves as a useful therapeutic and in some cases predictors of responsiveness to therapy (Taylor et al., 2021). The research field of diagnosing and treating endometriosis holds many exciting insights into treating various reproductive health conditions and chronic pain conditions at large. However, without substantial clinical trials that focus on an array of racial, sexual and ethnic identities, we will forever be behind on treating endometriosis effectively.
The Endometriosis Awareness Movement
Endometriosis is receiving a lot of attention as a feminist health issue right now, serving as a breeding ground for women’s health injustices to surface. A large topic of discussion that has brought in attention for endometriosis is a now retracted publication being resurfaced, and gaining attention online for being a ludicrous misuse of health research. The study, titled “Attractiveness of Women with Rectovaginal Endometriosis: A Case-Control Study” has now been redacted for ethical concerns, especially considering the women involved were not properly informed about the nature of the study. Even while ignoring the problematic consent issues, the article serves as an unfortunate reflection into how endometriosis is not taken seriously as a chronic disease. Endometriosis is severely underfunded in proportion to its impact, yet research, such as the retracted article, did manage to receive funding despite serving no benefit to patients. This reflects the lack of urgency in solving this predominantly AFAB issue. This is not a standalone example—there have been studies assessing the effect that endometriosis has on the male partners of women that have it. One study, which involved a questionnaire for male partners, came from a research group that primarily assessed the effect that endometriosis has on the patient themselves, which inspired them to ask about their male partners (Fernandez et al,. 2006). While these research efforts do not discredit women’s experiences, the question of how endometriosis impacts romantic partners exposes underlying beliefs about women’s sexual health. Since endometriosis can lead to pain during sexual intercouse, it can deeply impact intimate relationships. According to the study, some men experienced anger towards the patient for having the disease and reported difficulties with the large emotional demands that endometriosis brings forward. Additionally, this study calls for the inclusion of support for the male partner to be included in care for the patient. This reflects overall the sentiment that women’s suffering is a burden for those around, and how the male experience can be centered even in a predominantly women’s issue. Overall, male-centered research is a large injustice in the field, and even predominantly women’s health issues are not immune.
Endometriosis is a widespread global phenomenon, and while its lack of research and awareness is representative of many injustices in the field of medicine, that is no reason to be discouraged. Endometriosis is currently in the spotlight, in part, due to the ridiculous-natured studies described previously. This attention is great for awareness, but ultimately fruitless if no concrete action emerges. A “Call to Action” by Frontiers in Global Women’s Health outlines the many burdens and injustices women with endometriosis face. It clearly states the many possible pathways for endometriosis research to advance, including improving diagnostic methods and increasing treatment options (Ellis et al., 2022). This comprehensive overview signals that the field of research is not shying away from endometriosis research due to a lack of research avenues, but rather because of a lack of drive. Awareness and public outcry can expedite this research being put into fruition. Public outcry is currently present in many forms, including numerous Gofundme fundraisers and petitions, and many activist groups. This call to action is directed at research institutions such as the NIH, FDA, and congress members who have control over research funding and policy. One group, titled “Endometriosis Worldwide March” has 300,000 members globally. These forms of activism are few representatives of the large public uproar surrounding endometriosis currently, in addition to growing public disillusionment surrounding research injustices. The amount of awareness surrounding endometriosis is promising for filling both the gaps in research and the overall deep rooted discrepancies that exist within clinical research. With more research comes easier diagnosis, more treatment options, and overall less stigma and hesitancy that is currently clouding endometriosis care.
CONCLUSION
Throughout researching and interviewing for this paper, we found a lot of meaning in connecting with those who were willing to share their experiences with us. We were able to build solidarity with our peers who shared their experiences to deepen our understanding of what it means to have endometriosis. We gained a lot more clarity as to how living with a reproductive chronic pain condition impacts everyday life. Our awarenesses increased in unexpected ways with regards to how societal narratives inform experiences with endometriosis – our interviewees opened our eyes to the stigmas that they have faced, and the mental health implications they endure. Further, we noted that both interviewees emphasized the constant self advocacy they practiced from a young age.
In this systematic review, we aimed to dissect why endometriosis is clinically and socially dismissed through analyzing history, economics, and social stigma using qualitative and quantitative metrics. We demonstrated how the history of gynecology has informed current social stigmas surrounding reproductive health conditions for women and particularly women of color, which perpetuates barriers to accessing medical care for endometriosis. Furthermore, we learned that the only way we can effectively treat endometriosis equitably is through demystifying the pathology of the disease. Medical professionals seem to be operating at a competency and awareness of the disease that most non-clinicans are, with a deep rooted fear of treating women’s health conditions. Though increased research into the etiology of endometriosis is certainly important, we must ensure that clinical trials for treating and diagnosing endometriosis include a wide array of racial and gender identities to ensure generalizability in results. It has become evident that the problem was not that endometriosis was untreatable but rather physicians and research institutions alike refuse to treat the disease. There are many exciting avenues that would reduce the barriers to getting diagnoses through minimally invasive and cheaper techniques, and innovative clinical trials to improve the diversity of therapeutics available to treat the disease; however, because there is rampant apathy towards women’s health conditions, there has been little to no progress made. The research that was done through combing through scientific journals was contextualized through the interviews, which grounded our statistical research into reality. The fight for endometriosis recognition is ongoing and demands tangible change. We hope to contribute to the fight through this paper and our professional careers.
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