Abstract
Objective:
Endometriosis is associated with significant diagnostic delays, averaging 6.7 years, largely due to nonspecific symptoms and inadequate diagnostic approaches. Over 15,000 emergency department (ED) visits in the United States annually involve patients with endometriosis, highlighting the need for knowledge of endometriosis. This study surveys emergency medicine (EM) attendings, residents, nurse practitioners, physician assistants, and fellows to assess knowledge and practice in managing endometriosis-related ED complaints.
Methods:
A questionnaire from a prior endometriosis survey was modified for EM providers and administered anonymously via email (Qualtrics, Provo, UT) in monthly newsletters to providers at an academic and six associated community EDs. Descriptive statistics were applied for analysis.
Results:
Among 59 respondents, 60.3% were female, 37.9% male, and 1.7% nonbinary. Most were attending physicians (44.8%) or residents (31.0%). Regarding knowledge of endometriosis, 50.0% of respondents rated themselves as “somewhat knowledgeable,” while 37.9% were “moderately knowledgeable,” and 5.2% were “not knowledgeable at all.” 36.2% felt they lacked adequate knowledge on managing endometriosis in the ED. 13.8% did not consider endometriosis in their differential diagnoses, despite 89.7% reporting that they evaluated gynecological complaints frequently (36.2% monthly, 43.1% weekly, and 10.3% daily). 74.1% desired education on endometriosis. Symptom recognition exceeded respondents’ self-reported knowledge; >60% reported they were at least “likely” to associate endometriosis with dyspareunia, cyclical painful defecation, dysmenorrhea, fertility disorders, menstrual cycle abnormalities, and chronic pelvic pain.
Conclusions:
There may be a gap in endometriosis knowledge among EM providers, with many expressing interest in further education. Targeted training may improve diagnostic accuracy, reducing diagnostic delays.
Keywords
Introduction
Endometriosis is a chronic, estrogen-driven inflammatory disease affecting an estimated 200 million women worldwide. 1 Endometriosis is characterized by endometrial tissue growth outside of the uterine cavity. The pelvis is the most common location where endometriosis is found, but it can affect anywhere in the body, including lungs and brain. Common symptomatic presentations include pelvic discomfort, dyspareunia, dysmenorrhea, and infertility. 1 Clinical presentation is variable, with some women experiencing cyclical pelvic pain associated with heavy bleeding, while others are asymptomatic. 2 Unfortunately, these symptoms can also be normalized as menstrual pain, which could lead health care providers to overlook a potential endometriosis diagnosis. It often results in multiple visits before a definite diagnosis is made, with a typical lapse of 4–11 years from symptom onset. 3
Women with endometriosis often present to the emergency department (ED) or primary care provider outside of Obstetrics and Gynecology for diagnostic workup and symptom management. The literature demonstrates increased utilization of the ED and other health care resources by patients with endometriosis compared with patients without endometriosis. Agarwal et al. reviewed nationally representative estimates of ED visits for endometriosis by women aged 18–49 from the Health Care Utilization Project Nationwide Emergency Department Sample. 4 They found that the annual number of ED visits nationally, with a principal diagnosis code of endometriosis, was stable at ∼15,000 visits per year from 2006 to 2015. Williams et al. evaluated clinical utilization of 975 patients with confirmed endometriosis. More than half of the patients were seen in an ED in the 5 years leading up to diagnosis, with an average of 3.46 visits per individual. 5
Patients with endometriosis face a greater economic burden associated with the disease compared with those without endometriosis. The mean cost of care 2–5 years leading up to diagnosis was $4318 in the Williams et al. study. Cost increased to $6791 in the year prior to diagnosis and increased significantly to $17,230 in the first 6 months after being diagnosed. In addition, the cost of a single ED visit for endometriosis for women aged 18–49 has increased over the years, with national estimates showing an increase from $2458 to $4953 from 2006–2007 to 2014–2015. 4 Soliman et al. compared endometriosis patients with matched controls to discover that women with endometriosis have significantly higher total direct health care costs. These findings underscore the considerable economic impact of endometriosis. 6 A more timely and accurate detection of endometriosis could not only help reduce the financial burden incurred through health care resource utilization but also decrease the cost of lost wages due to the personal impact of endometriosis symptoms.
Health care providers may not feel they have adequate knowledge of endometriosis to manage or diagnose it accurately. A study conducted in France discovered that only 25.0% of general practitioners felt that they were appropriately informed with regard to endometriosis in their clinical practice. However, this increased to 31.4% when practitioners received continuing medical education (CME) courses in gynecology. 7 Patients receiving care in an ED for endometriosis-related complaints may identify these differences in knowledge between providers. Some individuals describe seeking help in the ED as “playing the odds” because of the lack of predictability in how they would be cared for. 8 In a prospective French study analyzing cross-sectional data from 1000 adult patients with endometriosis, patients listed ideas to improve endometriosis management. The top five areas of improvement mentioned by >10% of patients were to (1) train caregivers to develop their knowledge on endometriosis, (2) provide better management of daily pain and pain attacks, (3) take patient-reported symptoms seriously, (4) standardize diagnostic processes to improve early detection, and (5) have caregivers listen more to the patients. 9
Given the increased resource utilization, financial burden, and number of ED and office visits due to unrecognized endometriosis, advancing providers’ knowledge of endometriosis remains paramount. Patients benefit from a faster pathway to diagnosis, as it opens the door to management strategies and appropriate treatment. 10 By surveying emergency medicine (EM) at a large academic medical center and its system of affiliated community hospitals, we sought to gain a better understanding of their current knowledge and clinical practice with endometriosis-related complaints. With this information, we can then work toward further developing educational strategies to optimize providers’ knowledge of the disease to help decrease the lag time to receiving appropriate care.
Materials and Methods
This study was approved by our university’s institutional review board, the Medical College of Wisconsin Human Research Protection Program (Protocol #00049087). A unique questionnaire was developed to assess EM physician’s and advanced practice provider’s (APP’s) knowledge and practices related to endometriosis. The questionnaire used in this study was adapted and modified from a previous French study that evaluated endometriosis knowledge in general practitioners in the Picardie region of northern France. 7 Revisions were made by an EM physician medical director and a gynecologist specialized in endometriosis to tailor the content and language for EM providers, ensuring both relevance to acute care settings and accuracy in representing gynecological conditions commonly encountered in the ED.
The questionnaire comprised 39 questions. The questionnaire addressed the respondent’s role, sociodemographic data, knowledge of endometriosis (including prevalence and expected symptoms), typical ED work-up, and management practices.
The survey (Supplementary Data) was administered and stored electronically using Qualtrics (Qualtrics, Provo, UT), a secure, web-based survey platform that ensures anonymity of responses. Distribution was carried out through institutional email listservs and monthly EM departmental newsletters. The survey was disseminated to a broad group of EM providers, including attending physicians, residents, nurse practitioners, physician assistants, and fellows. Participants were recruited from a large academic ED and six affiliated community EDs within the same health system, representing a diverse cross-section of practice settings and provider roles.
The informed consent statement was embedded in the questionnaire as the first question. The survey was structured to end unless the participant answered, “I consent to participating in this study.” The consent statement reads as follows: “The goal of this research project is to determine the average starting points that patients encounter through their journey of receiving a diagnosis or treatment for their endometriosis. This information will allow our project to gain insight into first-line interactions of patient’s and their physicians regarding their symptoms. The process of participating in this study is to fill out a single multiple-choice questionnaire received through email via a Qualtrics survey. Only fully completed questionnaires will be counted for the study, so please fill all the fields completely if you choose to participate. Your responses will be deidentified and kept confidential to the extent allowed by law. When we write about the study, you will not be identified, and your name will not be used in presentations or publications. The survey will take approximately 5–7 minutes to complete. By consenting to participate in this study, you are agreeing to the terms and conditions described above. Do you consent?”
Descriptive statistical analyses were performed to characterize participant demographics and summarize patterns in knowledge, perceived barriers to diagnosis, and clinical decision-making regarding endometriosis. Data analysis focused on identifying gaps in provider understanding and areas for future educational interventions. Basic descriptives (counts and percentages) were determined using RStudio (Version 2025.05.0 + 496).
Results
The survey was sent to a total of 135 EM providers. This included 83 attending physicians, 36 resident physicians, and 16 APPs. A total of 59 physicians and APPs completed the survey. Most respondents identified as female (59.3%) (Table 1), followed by male (37.3%) and nonbinary (1.7%). Respondents were diverse in terms of years in practice, with 44.1% practicing for less than 5 years and 30.5% between 5 and 10 years. Residents and APPs made up 38.5% of the EM department at the time of survey distribution, while attending physicians made up the remaining 61.5% of the EM department. Attending physicians were slightly underrepresented in survey responses with 44.1% of respondents identifying as attending physicians. Resident physicians and APPs were slightly overrepresented in survey responses with 30.5% of respondents identifying as resident physicians and 22.1% identifying as physician assistants or nurse practitioners. Only the demographics of the respondents are available. It is possible that this subset of EM providers could significantly differ from the total group.
Survey Questions and Responses
n (%).
For “select all that apply” items, percentages are based on the number of respondents to the question; totals may exceed 100% as respondents could select multiple options.
Conditional variables; proportions were estimated only within the subgroup using the denominator of 43 .
Conditional variables; proportions were estimated only within the subgroup using the denominator of 12.
*Missing data were excluded from estimating proportions.
NSAIDs, nonsteroidal anti-inflammatory drugs.
Gynecological complaints were encountered frequently in clinical practice, with 42.4% of providers reporting seeing such cases several times per week and 35.6% several times per month. Despite this, only 1.7% of providers considered themselves “very knowledgeable” about endometriosis, while 49.2% felt “somewhat knowledgeable,” and 5.1% reported “no knowledge at all.” When asked whether they felt they had sufficient knowledge to manage endometriosis, 57.6% responded “yes” and 35.6% “no.”
Endometriosis was most commonly considered a diagnosis of exclusion, with 52.5% including it only after emergent conditions had been ruled out. Only 5.1% reported routinely considering it in their differential diagnosis, while 13.6% did not consider it at all. Most providers received their endometriosis education in school (67.8% in medical school, 13.6% in physician assistant school, and 11.9% in nurse practitioner school), with additional sources including clinical practice (42.4%) and residency training (25.4%).
Recognition of symptoms associated with endometriosis by emergency physicians, physician assistants, and nurse practitioners was better than self-reported knowledge. When asked to assess symptom associations with endometriosis, over 60% of respondents indicated they were either “likely,” “very likely,” or “extremely likely” to associate endometriosis with dyspareunia (64.4%), cyclical painful defecation (66.1%), dysmenorrhea (67.8%), fertility disorders (69.5%), menstrual cycle disorders (i.e., irregular/heavy bleeding and/or abnormal menstrual cycles, 72.9%), and chronic pelvic pain (79.6%). Despite this, “acute pelvic pain” and “cyclical urinary symptoms” were less commonly recognized as symptoms of endometriosis. Specifically, only 32.2% of respondents selected “likely,” “very likely,” or “extremely likely” when asked if they associated “acute pelvic pain” with endometriosis. Likewise, 49.1% of respondents did so for “cyclical urinary symptoms.”
Regarding clinical practice, for endometriosis-related symptoms, most providers recommended pelvic exams “most of the time” (54.2%) or “all the time” (11.9%) and ordered pelvic ultrasounds “sometimes” (50.8%) or “most of the time” (32.2%). For suspected endometriosis, the majority referred to general gynecologists (88.1%) or primary care providers (37.3%), with fewer utilizing gynecological consults in the ED (5.1%) or outside organizations (8.5%).
Nonsteroidal anti-inflammatory drugs (NSAIDs, 86.4%) and acetaminophen (71.2%) were the most reported medications for endometriosis management, with hormonal contraception reportedly prescribed by 39.0% of respondents, if there were no immediate plans for pregnancy. Similar patterns were seen for dysmenorrhea treatment, where NSAIDs (88.1%) and acetaminophen (67.8%) were most frequently used, followed by hormonal contraception (59.3%).
Most respondents (72.9%) expressed interest in receiving more information on endometriosis. Preferred methods included written materials (58.1%), clinical decision tools (53.5%), and conferences or grand rounds (51.2%). A total of 12 respondents did not express interest in additional endometriosis information due to already having all the information they need (n = 6), endometriosis not being relevant to their practice (n = 3), and other reasons, such as they are unlikely to use the material (n = 1) or they believe endometriosis is not a diagnosis made in the ED (n = 1).
Discussion
To our knowledge, this study is the first to assess the understanding of endometriosis, including its clinical presentation and management, among EM physicians and APPs in a blended academic and community practice in the United States. Most of our survey respondents reported they encounter patients with gynecological complaints at least several times per month, yet only half considered themselves at least “somewhat knowledgeable,” and only one individual in our survey considered themselves “very knowledgeable” about endometriosis. This highlights a knowledge gap among EM physicians and APPs and an opportunity to potentially improve clinical care by targeted educational activities/interventions.
These findings represent a significant opportunity for several reasons. A previous study found that patients with endometriosis often wait 6 or more years for an official diagnosis, despite studies showing that these patients had double the number of ED visits and greater health care utilization in general, as compared with patients without the disease. 6 To further complicate matters, endometriosis often presents with nonspecific symptoms and requires surgery for definitive diagnosis. 1 Inadequate endometriosis knowledge among EM providers regarding this inherently complex illness, especially with the increase in ED visits, could further delay diagnosis and treatment for patients suffering from this physically, psychologically, socially, and financially debilitating disease.
Even though EM providers encounter gynecological complaints frequently at our institution, endometriosis remains underconsidered in their differential diagnoses. Ruling out emergent conditions is the priority in EM, and as a result, many respondents did not routinely consider endometriosis in their differential diagnosis. Over half indicated they only considered it after more urgent conditions were ruled out, reflecting the common practice of prioritizing immediate threats to patient safety. This diagnostic hesitancy may stem from limited exposure to endometriosis in clinical practice. Most providers indicated that their education on endometriosis primarily came from medical school, physician assistant programs, or nurse practitioner training. A smaller proportion cited residency training and clinical experience as sources of learning, despite endometriosis being included as essential medical knowledge in the Core Content of the Model of the Clinical Practice of Emergency Medicine. 11 By this model, even for lower acuity and nonemergent conditions, the model recognizes the presence of these conditions in the ED but contextualizes them within the scope of EM practice. There is no separate guideline or standard of core of nonemergent conditions. Therefore, EM providers are responsible for establishing the acuity of the condition, managing the condition accordingly in the ED and referring to appropriate alternative care settings or services appropriately.
We also found varied symptom recognition among EM physicians and APPs. Respondents could generally identify key symptoms of endometriosis, such as chronic pelvic pain, menstrual cycle disorders, and dyspareunia, but were less likely to associate the symptoms of acute pelvic pain or cyclical urinary symptoms with the condition. This variation in recognition may contribute to underdiagnosis in the ED, where the focus on urgent conditions takes precedence.
Finally, considering that EM providers can play a vital role in recognizing signs of endometriosis and referring women to gynecology, it is important for them to have knowledge about the disease. Our survey found a high recognition rate in our respondents, reflecting good knowledge about the signs and symptoms of endometriosis.
Notably, our study revealed trends in endometriosis management among EM providers. Most performed pelvic exams routinely and utilized pelvic ultrasound in their evaluation. Furthermore, our providers primarily managed endometriosis-related symptoms with symptomatic pharmacologic treatment. It has been previously reported that NSAIDs are the most utilized first-line pharmacological management of pain and dysmenorrhea attributed to endometriosis. 12 Similarly, in our study, NSAIDs and acetaminophen were the most recommended medications by EM providers at our institution. There was also a strong preference to refer to gynecologists, followed by primary care providers, over an immediate gynecological consult. Since endometriosis is a chronic disease most commonly treated by gynecologists in the United States, referral is appropriate, highlighting the importance of having endometriosis on the differential in the ED.
Several studies that examined the perspectives of patients with endometriosis in other countries, including Sweden, New Zealand, and France, reported a need for improved knowledge of the disease among evaluating physicians.8,9,13 Most impactfully, when patients with endometriosis were asked, “if you had a magic wand, what would you change about your health care?”, the most common response was a call to train medical professionals to improve their knowledge of the disease, highlighting the distress these patients face when met with providers who fail to acknowledge and adequately treat their pain. 9 Similarly, in our study, the desire for further education on endometriosis was also expressed by many of the respondents, suggesting that EM providers also recognize their knowledge deficits, which illustrates an important first step in the improvement of endometriosis care. Furthermore, they are interested in receiving additional training on how to manage endometriosis-related complaints. The top preferred methods of receiving education included written materials, clinical decision tools, and conferences or grand rounds. Our results build upon previous studies by showing how choosing the appropriate educational initiative medium could increase educational uptake. In turn, this can increase endometriosis knowledge, improve diagnostic accuracy, reduce delays, and improve the care and outcomes for patients who present to the ED with symptoms or complications of this condition. The integration of endometriosis education into residency training and CME for EM could be a potential avenue for increasing awareness of endometriosis and minimizing this knowledge gap.
Our study has several limitations that should be considered when interpreting the results. First, the sample size was relatively small and limited to a single academic EM practice staffing a network of hospitals in the Midwest and may not fully represent the broader EM community. In addition, while the use of an anonymous survey allowed for candid responses, the self-reported nature of the data may have introduced some bias, as respondents may have overestimated their knowledge or underreported their gaps in understanding. Participation in the survey was voluntary, which may have introduced selection bias, as those who chose to complete the survey may have had pre-existing interest in endometriosis and their knowledge gaps. Future research with a larger, more diverse sample size could help validate these findings and further explore the barriers to endometriosis diagnosis and management in the ED setting.
Conclusions
In conclusion, our study underscores the need for increased awareness and education on endometriosis among EM physicians and APPs. Addressing the identified knowledge gap could lead to timelier diagnoses, better management of endometriosis-related symptoms, and, ultimately, improved patient outcomes. Further research and the development of targeted educational programs are essential in ensuring that EM providers are adequately equipped to handle the challenges presented by this often-underrecognized condition.
Authors’ Contributions
C.I.: Conceptualization, methodology, investigation, writing—original draft, and visualization. L.X.C.: Conceptualization, methodology, investigation, writing—original draft, and visualization. E.S.: Investigation and writing—review and editing. P.S.: Data curation, formal analysis, visualization, and writing—review and editing. H.K.: Conceptualization, methodology, resources, and writing—review and editing. S.T.: Conceptualization and methodology. A.B.: Conceptualization and methodology. C.B.: Conceptualization, methodology, supervision, validation, and writing—review and editing. J.A.: Conceptualization, methodology, investigation, supervision, validation, and writing—review and editing.
Footnotes
Acknowledgments
The authors would like to thank the EM attendings, residents, nurse practitioners, physician assistants, and fellows at the academic medical center and affiliated community EDs who generously contributed their time and insights to this study. The authors are also grateful to the departments of Data Analytics and Informatics, Obstetrics and Gynecology, and Emergency Medicine for their support and collaboration throughout this research. This work would not have been possible without the engagement of frontline providers and their dedication to improving the care of patients with endometriosis.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Supplemental Material
Abbreviations
References
Supplementary Material
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