Perceived Access to Endometriosis Care Among Hispanic Women: A Cross-Sectional Survey

Endometriosis is a chronic, inflammatory disease affecting an estimated 10% of reproductive-age women worldwide [ 1 ]. It is estrogen-based and associated with infertility, pelvic pain, and diminished quality of life [ 2 , 3 ]. Diagnosis is often delayed by 7-12 years after symptom onset, contributing to worsening physical, emotional, and social outcomes [ 3 , 4 ]. Diagnostic delay has been consistently attributed to symptom normalization, dismissal of pain complaints, and variability in presenting symptoms [ 5 - 7 ]. Beyond its clinical burden, endometriosis imposes significant quality of life burdens and economic costs, with estimates exceeding $69 billion annually in the United States (US) due to both medical costs and loss of work productivity among affected women [ 3 , 8 ]. Growing evidence indicates that the burden of endometriosis and access to effective care are not experienced equally across populations. Racial, ethnic, and socioeconomic disparities contribute to inequities in diagnosis, management, and surgical outcomes [ 2 , 9 ]. Historically believed to primarily affect White women, endometriosis is now recognized as similarly or more prevalent among Hispanic, Black, and Asian women, yet inequities in care persist [ 2 , 9 ]. For example, Hispanic and Black women are less likely than White women to undergo minimally invasive surgery and more likely to experience perioperative complications [ 9 ], reflecting systemic differences in referral patterns, insurance coverage, and access to specialists [ 3 ]. Hispanic patients with endometriosis appear to face particularly pronounced barriers to obtaining comprehensive care possibly due to differences in pain expression and cultural norms [ 10 , 11 ]. These barriers persist despite many Hispanic respondents being educated and employed, suggesting structural rather than individual-level factors. Additional studies show that women from minority racial and ethnic groups in the US are more likely to encounter misdiagnosis, stigmatization, and dismissal of pain complaints when seeking care for endometriosis-related symptoms [ 3 , 12 ]. Younger women and women from racial and ethnic minority groups consistently report lower satisfaction with their endometriosis care and reduced perceptions of patient-centeredness [ 4 ]. Conceptual frameworks such as the Perceived Access to Healthcare Questionnaire (PAHQ) emphasize that meaningful access extends beyond availability and affordability to include acceptability, accommodation, and awareness [ 13 ]. These dimensions are particularly relevant for Hispanic patients, who may face compounded language, cultural, and geographic barriers. Despite the high prevalence of endometriosis, the disproportionate challenges experienced by marginalized populations, and persistent gaps in equitable care, little is known about how Hispanic women, particularly those living outside the US, perceive access to endometriosis care across referral, financial, and geographic domains. To address this gap, we conducted an international, web-based survey to examine perceived access to care and patient-centeredness among women with endometriosis. The primary objective was to assess perceived access to care across groups defined by Hispanic ethnicity and country of residence. Secondary objectives were to compare referral experiences, specialist access, financial barriers, and geographic access between groups to identify barriers that may inform more culturally responsive and equitable models of endometriosis care.

Sample characteristics Among the 288 participants who completed the survey and were included in the analysis, 151 resided in the US and 137 outside the US, with notable geographic diversity across both Hispanic and non-Hispanic respondents (Figure 1 ). No artificial intelligence (AI) tools were used in the creation, design, or modification of the figure. Sociodemographic differences across groups were substantial, as noted in Table 1 . U.S. Hispanic participants had a significantly different age distribution and were more racially diverse than U.S. non-Hispanics, while non-U.S. Hispanic participants were significantly older and reported lower educational attainment. Employment patterns differed mainly among non-U.S. non-Hispanic respondents, who were more likely to be students. Chi-square or Fisher’s exact test was used to assess differences across the four ethnicity/country of residence groups. *Represents differences across the four ethnicity/country of residence groups. †Pairwise comparisons were conducted between each group and U.S. non-Hispanic participants (categorical variables). ‡χ² statistics are shown, where χ² tests were used. For comparisons with sparse cell counts, Fisher’s exact test was applied; a χ² statistic is therefore not reported for those comparisons. P-values<0.05 considered statistically significant. U.S.: United States; χ² = chi-square; df: degrees of freedom; NA: not applicable Diagnostic experiences Across all groups, nearly all respondents reported receiving a professional endometriosis diagnosis, most often between ages 25 and 34 years (Table 2 ). Chi-square or Fisher’s exact test was used to assess differences across the four ethnicity/country of residence groups. *Represents differences across the four ethnicity/country of residence groups. †Pairwise comparisons were conducted between each group and U.S. non-Hispanic participants (categorical variables). ‡χ² statistics are shown where χ² tests were used. For comparisons with sparse cell counts, Fisher’s exact test was applied; a χ² statistic is therefore not reported for those comparisons. P-values<0.05 considered statistically significant. Questions related to diagnostic pathway were answered by all respondents based on their symptom history and diagnostic experience, regardless of formal healthcare professional diagnosis status. U.S.: United States; χ² = chi-square; df: degrees of freedom; NA: not applicable Diagnostic delays were long, with the majority in each group reporting >five years from symptom onset to diagnosis. About one-third or more, 9 (32%) U.S. Hispanics to 33 (65%) non-U.S. non-Hispanics, saw five or more providers before receiving a diagnosis, indicating widespread diagnostic fragmentation. These patterns did not differ significantly between groups. Specialist access differed meaningfully: only 47 (55%) non-U.S. Hispanic respondents had seen an endometriosis specialist, compared with 92 (75%) U.S. non-Hispanics (p = 0.002). Perceived access to knowledgeable clinicians was low across all groups, with fewer than one-third in any group reporting adequate access. Travel and geographic burden Travel burden showed the clearest disparities (Table 2 ). U.S. Hispanics were less likely to require out-of-state or international travel for specialist care, as shown by 2 (7%) U.S. Hispanics traveling out-of-state compared to 32 (26%) U.S. non-Hispanics (p=0.04). In contrast, 34 (40%) non-U.S. Hispanic participants required cross-border travel when compared to the U.S. non-Hispanic group; this represented the greatest difference in travel burden across all groups (p=0.04). Distance traveled also differed significantly. Compared with U.S. non-Hispanics, U.S. Hispanic respondents were more likely to live within 25 miles of a specialist, 21 (75%) U.S. Hispanics to 52 (42%) U.S. non-Hispanics (p=0.01). In contrast, 18 (21%) non-U.S. Hispanics reported traveling more than 100 miles, whereas no U.S. non-Hispanic respondents traveled that far (p≤0.001). These findings highlight substantial geographic differences in reported access to specialized care, particularly for Hispanic respondents outside the U.S. Barriers to accessing endometriosis care All comparison groups reported greater difficulty obtaining a referral to an endometriosis specialist than U.S. non-Hispanic participants, with the greatest burden observed among non-U.S. Hispanic respondents (Table 3 ). Referral challenges were especially pronounced among non-U.S. Hispanics, as seen by 68 (79%) non-U.S. Hispanics reporting difficulty obtaining a referral as compared to 49 (40%) U.S. non-Hispanics (p≤0.001). Financial barriers followed a similar pattern, affecting 60 (70%) non-U.S. Hispanics as compared to 65 (53%) U.S. non-Hispanic respondents (p=0.01). A high proportion of participants reported lacking health insurance, with the highest prevalence observed among U.S. Hispanics, of whom 17 (61%) reported being uninsured, compared to 53 (43%) U.S. non-Hispanics; however, this difference did not reach statistical significance. Long wait times were commonly reported across all groups, with 182 (63%) respondents overall indicating delays. Among the specific groups, 44 (51%) non-U.S. Hispanics reported long wait times compared to 81 (66%) U.S. non-Hispanics, a difference that was statistically significant (p=0.03). Chi-square or Fisher’s exact test was used to assess differences across the four ethnicity/country of residence groups. *Represents differences across the four ethnicity/country of residence groups. †Pairwise comparisons were conducted between each group and U.S. non-Hispanic participants (categorical variables). ‡χ² statistics are shown, where χ² tests were used. For comparisons with sparse cell counts, Fisher’s exact test was applied; a χ² statistic is therefore not reported for those comparisons. P-values<0.05 considered statistically significant. U.S.: United States; χ² = chi-square; df: degrees of freedom; NA: not applicable Distance to care was commonly identified as a barrier across all groups, though no significant differences were observed between groups (Table 3 ). Perceived lack of knowledgeable providers was reported at high rates across all populations. Although access was low across all groups, modest differences were observed, with non-U.S. Hispanic participants reporting significantly lower access compared with the reference group (Table 3 ). Overall, referral difficulties, financial constraints, distance-related concerns, and perceived limitations in provider expertise were frequently reported across groups.

This study describes the differences in perceived access to endometriosis-related care among survey respondents, with particularly pronounced barriers reported by Hispanic participants living outside the US. While previous research has examined broad racial and ethnic disparities in gynecologic and reproductive health, few studies have specifically examined how Hispanic women - in the U.S. or internationally - experience access to endometriosis care. By characterizing diagnostic experiences, referral pathways, travel burden, financial barriers, and perceived availability of knowledgeable clinicians, our findings help contextualize structural inequities identified in population-level surgical datasets. Previous studies have shown that Hispanic and other minority patients have reduced access to minimally invasive surgery and poorer perioperative outcomes. For example, Orlando et al. reported that Hispanic women were significantly less likely to receive minimally invasive procedures and experienced higher perioperative complication rates, while Westwood et al. described consistent patterns of minority patients facing reduced access to minimally invasive options and suboptimal surgical outcomes [ 2 , 9 ]. While our data cannot identify causal pathways, our respondents’ experiences are consistent with patterns observed in surgical outcome studies and may reflect upstream access barriers that co-occur with those disparities. Given the nonprobability sampling strategy, reliance on self-reported data, and lack of multivariable adjustment, these findings should be interpreted as exploratory and hypothesis-generating rather than definitive estimates of disparities in endometriosis care. Across groups, diagnostic challenges were substantial: long delays, high rates of seeing more than five providers before diagnosis, and low perceived access to knowledgeable clinicians were common among all participants. However, several disparities emerged when comparing groups to U.S. non-Hispanic participants (the reference group). Non-U.S. Hispanic participants differed most significantly across multiple domains. They were substantially older, had lower educational attainment, and demonstrated the most pronounced barriers to care, including the lowest rates of specialist evaluation and the highest rates of referral difficulty and financial burden. These access patterns may in part reflect underlying differences in age, educational attainment, and employment status between groups, which were not adjusted for in this exploratory analysis. Travel-related challenges were also most significant in this group, with over one-third requiring cross-border travel and one-fifth traveling more than 100 miles compared with no U.S. non-Hispanic respondents reporting such extreme distances. These findings suggest substantial access barriers at the health system and geographic level for Hispanic patients living outside the US, which may demonstrate geographic maldistribution of gynecologic subspecialists, particularly in rural and resource-limited settings that lead to long travel distances, as described in previous work [ 14 ]. This increased travel burden may be an interrelated mechanism contributing to the low rates of specialist evaluation due to decreased accessibility and number of specialists in non-U.S. communities, but this present study was not designed to identify a specific causal mechanism. Differences in healthcare infrastructure, specialist availability, referral pathways, insurance systems, and language or cultural barriers may contribute to the disparities observed between groups and warrant further supply-side investigation to determine causality. U.S. Hispanic participants demonstrated fewer differences from U.S. non-Hispanics, but important inequities remain. They differed significantly in age and racial distribution and reported higher referral difficulty. Notably, those who accessed specialist care tended to live closer to a specialist, raising the possibility that geographic access may not be the primary barrier for this group, and that referral pathways or care navigation may play a larger role. Although differences in financial barriers and insurance status were not consistently statistically significant, U.S. Hispanics demonstrated a clinically meaningful trend toward higher financial burden relative to the reference group, suggesting that cost-related challenges may still play an important role. Participants frequently viewed long diagnostic delays, difficulty securing referrals, and limited access to specialists as indications of inequitable or fragmented systems of care rather than isolated obstacles. These findings suggest that referral difficulties, particularly those reported by both U.S. and non-U.S. Hispanic participants, are associated with lower reported access to specialized care and may help contextualize differences in satisfaction and care delivery. This is consistent with Zaritsky et al., who found lower referral rates among non-White women with endometriosis, although their study focused primarily on Black women [ 15 ]. Additionally, the geographic challenges identified in this study may partially contextualize the higher rates of perioperative complications among Hispanic patients reported by Orlando et al [ 9 ]. Similar barriers related to geography, cost, insurance, and provider communication have been documented in reproductive healthcare for Latina women, even outside the context of endometriosis [ 16 ]. More broadly, race, ethnicity, socioeconomic status, and geographic location contribute to disparities in care quality and outcomes for women with endometriosis, potentially underlying the geographic and financial barriers that could lead to feelings of stigmatization [ 2 ]. Differences in referral pathways, insurance coverage, and specialist access have also been highlighted as factors associated with delays and limiting access to care across all populations, not just Hispanics [ 3 ]. Finally, younger women and ethnic minorities report lower levels of patient-centered care and involvement in decision-making, which may further explain decreased access to specialized care [ 4 ]. Language discordance between patients and clinicians has been shown to negatively impact patient-centered communication, satisfaction, and shared decision-making, and may partially explain these differences [ 17 ]. Although some barriers overlap with those experienced by other minority groups, our study emphasizes the unique combination of geographic, financial, and referral challenges perceived by Hispanic women with endometriosis internationally. These patterns are consistent with broader effects of structural racism on healthcare access and quality [ 18 ]. There are a few important limitations to consider. The cross-sectional convenience sample limits generalizability, and findings should be interpreted as perceptions rather than population-level estimates. The adapted survey instrument has not yet been formally validated, and Hispanic respondents were not categorized by subgroup (e.g., Mexican, Puerto Rican, Colombian). Online recruitment may have excluded participants with limited internet access or lower health literacy, potentially underrepresenting more vulnerable populations. Analyses were unadjusted and exploratory, and therefore did not account for potential confounding variables such as socioeconomic status, insurance coverage, language and cultural barriers, healthcare infrastructure, or disease severity. These variables that differ between ethnic and geographic groups require further research to disentangle these complex relationships. Future research should prioritize strategies to improve culturally responsive endometriosis care and reduce referral, financial, and geographic barriers to specialist access. The survey instrument used in this study may serve as a foundation for future investigations across diverse healthcare settings. Interventions such as patient navigation programs, telehealth expansion, and bilingual community-based support warrant further evaluation for their potential to improve access and patient experience. Additionally, longitudinal studies are needed to assess how access to specialized care influences clinical outcomes, patient satisfaction, and quality of life over time. More granular analyses of Hispanic subgroups, including language preference, immigration status, and socioeconomic context, may further elucidate heterogeneity in barriers and care experiences.

In this international survey, Hispanic respondents - particularly those living outside the US - reported greater referral challenges, more financial constraints, and more geographic barriers to accessing endometriosis care compared with U.S. non-Hispanic respondents. These experiences included a lower likelihood of specialist evaluation and substantial travel burden, underscoring meaningful structural barriers to endometriosis care. Across all groups, limited perceived access to knowledgeable clinicians highlights a broader shortage of endometriosis expertise. Together, these patient-reported perspectives highlight potential targets for future interventions, including referral pathways, specialist availability, and financial and geographic barriers, to support more equitable and patient-centered endometriosis care.

We conducted a cross-sectional study using an anonymous, open, web-based survey administered through Qualtrics, a secure online survey platform, to assess perceived access to endometriosis-related care and associated barriers. Exact survey questions can be found in the Appendices. This study was reviewed by the University of South Florida Institutional Review Board and determined to be exempt from full review (IRB study #007633). Participants provided electronic informed consent before survey initiation. Data were collected between January 29, 2025, and April 10, 2025. Eligible participants were adults aged ≥18 years who were fluent in English or Spanish and who self-reported a previous clinical diagnosis or suspicion of endometriosis. The majority reported physician-confirmed diagnoses. Individuals who did not meet age, diagnostic, or language criteria were excluded. The survey was open internationally, and the country of residence was self-reported. Participants were recruited through convenience sampling using an open survey design. Recruitment occurred via internet-based outreach and community-based advertising, including social media platforms, national and international endometriosis advocacy organizations, and printed flyers posted in outpatient obstetrics and gynecology clinics at the study institution. Recruitment materials invited individuals with suspected or confirmed endometriosis to voluntarily participate in a brief survey about access to endometriosis-related care. Participation was not required to access any website, service, or clinical care, and no incentives were offered. The survey was administered entirely online, and responses were captured automatically by the Qualtrics platform without manual data entry. Only fully completed questionnaires were included in the analytic sample. Because recruitment occurred through an open survey design distributed across multiple online and community-based platforms, view, participation, and completion rates could not be reliably calculated. The electronic informed consent page described the study’s purpose, investigator identities, the voluntary nature of participation, the estimated completion time (approximately 5 minutes), the types of data collected, and data storage procedures. Participants were informed that no personally identifiable information would be collected and that study data would be retained for five years following study completion. Survey data were stored on password-protected Qualtrics servers and downloaded to encrypted, institutionally approved systems accessible only to authorized study personnel. Cookies were used by the Qualtrics platform to reduce the likelihood of multiple survey submissions. IP address checks, log file analyses, and timing-based exclusions were not performed. The questionnaire was available in English and Spanish and included items assessing demographics, clinical history, and perceived access to endometriosis-related care. Survey items were adapted from existing instruments, including the PAHQ and the World Endometriosis Research Foundation’s EPHect Patient Questionnaire. Because the final instrument incorporated adapted and newly developed items, it was intended to assess feasibility and clarity rather than serve as a formal validation study. Before dissemination, the survey underwent internal testing by the research team to assess usability, readability, and technical functionality within the Qualtrics platform. Spanish-language translation accuracy was confirmed through back-translation and review by bilingual researchers to ensure linguistic and cultural equivalence. Survey items were presented in a fixed order with adaptive questioning for certain items. The questionnaire consisted of approximately 10 items distributed across five screens. Missing responses were permitted, and completeness was assessed post-hoc. Respondents were able to review and modify their responses before final submission. Finally, because the survey was anonymous and contained demographic and geographic detail that could pose a re-identification risk for small subgroups, the de-identified dataset and analysis code are available from the corresponding author on reasonable request, subject to confirmation that re-identification risk is minimized. The primary outcome was perceived access to endometriosis-related care. Secondary outcomes included access to endometriosis specialists, referral experiences, financial barriers, travel burden, and other reported barriers to obtaining care. Quantitative analyses were descriptive and comparative. Categorical variables are summarized using frequencies and percentages. Participants were stratified by Hispanic ethnicity and country of residence into four groups: U.S. non-Hispanic, U.S. Hispanic, non-U.S. non-Hispanic, and non-U.S. Hispanic. Chi-square or Fisher’s exact test was used for categorical comparisons. Pairwise comparisons used U.S. non-Hispanic participants as the reference group. Analyses were exploratory, and no statistical weighting or correction was applied. A two-sided p-value <0.05 was considered statistically significant.