Discussion

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.