Results

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).

Figure 1: Survey Respondents by Country and U.S. StateNo 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.

 |  | U.S. residents | Non-U.S. residents | 
Characteristics | All (n=288) | Non-Hispanic (n=123) | Hispanic (n=28) | p-value† | Test statistic‡ | Non-Hispanic (n=51) | p-value† | Test statistic‡ | Hispanic (n=86) | p-value† | Test statistic‡ | p-value* | Test statistic‡
Age group |  |  |  | 0.002 | NA |  | 0.89 | NA |  | <0.001 | χ²=146.51, df=4 | <0.001 | χ²=184.59, df=12
18-25 | 49 (17.0) | 24 (19.5) | 7 (25.0) |  |  | 8 (15.7) |  |  | 10 (11.6) |  |  |  | 
26-35 | 84 (29.2) | 50 (40.7) | 9 (32.1) |  |  | 24 (47.1) |  |  | 1 (1.2) |  |  |  | 
36-45 | 63 (21.9) | 42 (34.1) | 4 (14.3) |  |  | 16 (31.4) |  |  | 1 (1.2) |  |  |  | 
46-55 | 49 (17.0) | 6 (4.9) | 4 (14.3) |  |  | 3 (5.9) |  |  | 36 (41.9) |  |  |  | 
>55 | 43 (14.9) | 1 (0.8) | 4 (14.3) |  |  | 0 |  |  | 38 (44.2) |  |  |  | 
Race |  |  |  | <0.001 | NA |  | 0.02 | χ²=5.60, df=1 |  | <0.001 | χ²=30.40, df=1 | <0.001 | χ²=34.07, df=3
White | 225 (78.1) | 114 (92.7) | 17 (60.7) |  |  | 41 (80.4) |  |  | 53 (61.6) |  |  |  | 
Other | 63 (21.9) | 9 (7.3) | 11 (39.3) |  |  | 10 (19.6) |  |  | 33 (38.4) |  |  |  | 
Highest education level |  |  |  | 0.74 | NA |  | 0.38 | χ²=1.92, df=2 |  | 0.005 | χ²=10.59, df=2 | 0.008 | χ²=17.44, df=6
HS or less | 45 (15.6) | 13 (10.6) | 3 (10.7) |  |  | 5 (9.8) |  |  | 24 (27.9) |  |  |  | 
Some college | 44 (15.3) | 22 (17.9) | 3 (10.7) |  |  | 5 (9.8) |  |  | 14 (16.3) |  |  |  | 
College graduate | 199 (69.1) | 88 (71.5) | 22 (78.6) |  |  | 41 (80.4) |  |  | 48 (55.8) |  |  |  | 
Employment status |  |  |  | 0.21 | NA |  | 0.005 | χ²=10.49, df=2 |  | 0.44 | χ²=1.63, df=2 | 0.03 | χ²=13.76, df=6
Working | 215 (74.7) | 98 (79.7) | 19 (67.9) |  |  | 36 (70.6) |  |  | 62 (72.1) |  |  |  | 
Studying | 29 (10.1) | 7 (5.7) | 4 (14.3) |  |  | 11 (21.6) |  |  | 7 (8.1) |  |  |  | 
Unemployed/retired | 44 (15.3) | 18 (14.6) | 5 (17.9) |  |  | 4 (7.8) |  |  | 17 (19.8) |  |  |  | 
Do you have health insurance? |  |  |  | 0.09 | NA |  | <0.001 | χ²=44.07, df=1 |  | <0.001 | χ²=28.21, df=1 | <0.001 | χ²=43.56, df=3
Yes | 247 (85.8) | 122 (99.2) | 26 (92.9) |  |  | 33 (64.7) |  |  | 66 (76.7) |  |  |  | 
No | 41 (14.2) | 1 (0.8) | 2 (7.1) |  |  | 18 (35.3) |  |  | 20 (23.3) |  |  |  | 

Diagnostic experiences

Across all groups, nearly all respondents reported receiving a professional endometriosis diagnosis, most often between ages 25 and 34 years (Table 2).

 |  | U.S. residents | Non-U.S. residents |  | 
Experiences | All (n=288) | Non-Hispanic (n=123) | Hispanic (n=28) | p-value† | Test statistic‡ | Non-Hispanic (n=51) | p-value† | Test statistic‡ | Hispanic (n=86) | p-value† | Test statistic‡ | p-value* | Test statistic‡
Were you diagnosed with endometriosis by a healthcare professional? |  |  |  | 0.61 | NA |  | 0.67 | NA |  | 0.40 | NA | 0.30 | NA
Yes | 279 (96.9) | 118 (95.9) | 26 (92.9) |  |  | 50 (98.0) |  |  | 85 (98.8) |  |  |  | 
No | 9 (3.1) | 5 (4.1) | 2 (7.1) |  |  | 1 (2.0) |  |  | 1 (1.2) |  |  |  | 
At what age were you diagnosed with endometriosis? |  |  |  | 0.83 | χ²=0.36, df=2 |  | 0.78 | χ²=0.51, df=2 |  | 0.97 | χ²=0.06, df=2 | 0.99 | χ²=1.00, df=6
Under 25 | 85 (29.5) | 38 (30.9) | 8 (28.6) |  |  | 13 (25.5) |  |  | 26 (30.2) |  |  |  | 
25-34 | 129 (44.8) | 54 (43.9) | 14 (50.0) |  |  | 24 (47.1) |  |  | 37 (43.0) |  |  |  | 
35+ | 74 (25.7) | 31 (25.2) | 6 (21.4) |  |  | 14 (27.5) |  |  | 23 (26.7) |  |  |  | 
How long did it take to receive a diagnosis of endometriosis after your first symptoms? |  |  |  | 0.45 | NA |  | 0.75 | NA |  | 0.52 | χ²=2.27, df=3 | 0.54 | NA
Less than 1 year | 28 (9.7) | 12 (9.8) | 2 (7.1) |  |  | 4 (7.8) |  |  | 10 (11.6) |  |  |  | 
1-2 years | 16 (5.6) | 6 (4.9) | 1 (3.6) |  |  | 2 (3.9) |  |  | 7 (8.1) |  |  |  | 
2-5 years | 49 (17) | 19 (15.4) | 8 (28.6) |  |  | 5 (9.8) |  |  | 17 (19.8) |  |  |  | 
> 5 years | 195 (67.7) | 86 (69.9) | 17 (60.7) |  |  | 40 (78.4) |  |  | 52 (60.5) |  |  |  | 
How many healthcare providers did you see before receiving a diagnosis? |  |  |  | 0.44 | χ²=2.72, df=3 |  | 0.06 | χ²=7.37, df=3 |  | 0.59 | χ²=1.91, df=3 | 0.07 | χ²=15.84, df=9
1 | 25 (8.7) | 10 (8.1) | 1 (3.6) |  |  | 4 (7.8) |  |  | 10 (11.6) |  |  |  | 
2-3 | 70 (24.3) | 29 (23.6) | 10 (35.7) |  |  | 6 (11.8) |  |  | 25 (29.1) |  |  |  | 
4-5 | 65 (22.6) | 31 (25.2) | 8 (28.6) |  |  | 8 (15.7) |  |  | 18 (20.9) |  |  |  | 
> 5 | 128 (44.4) | 53 (43.1) | 9 (32.1) |  |  | 33 (64.7) |  |  | 33 (38.4) |  |  |  | 
Have you been evaluated by an endometriosis specialist? |  |  |  | 0.26 | χ²=1.27, df=1 |  | 0.57 | χ²=0.33, df=1 |  | 0.002 | χ²=9.22, df=1 | 0.02 | χ²=9.71, df=3
Yes | 193 (67.0) | 92 (74.8) | 18 (64.3) |  |  | 36 (70.6) |  |  | 47 (54.7) |  |  |  | 
No | 95 (33.0) | 31 (25.2) | 10 (35.7) |  |  | 15 (29.4) |  |  | 39 (45.3) |  |  |  | 
Do you feel that you have adequate access to healthcare provider’s knowledge about endometriosis? |  |  |  | 0.99 | χ²=0.02, df=2 |  | 0.08 | χ²=5.01, df=2 |  | 0.10 | χ²=4.60, df=2 | 0.23 | χ²=8.06, df=6
Yes | 60 (20.8) | 32 (26.0) | 7 (25.0) |  |  | 6 (11.8) |  |  | 15 (17.4) |  |  |  | 
No | 200 (69.4) | 83 (67.5) | 19 (67.9) |  |  | 39 (76.5) |  |  | 59 (68.6) |  |  |  | 
Unsure | 28 (9.7) | 8 (6.5) | 2 (7.1) |  |  | 6 (11.8) |  |  | 12 (14.0) |  |  |  | 
Do you need to travel out of state or to a different country to see an endometriosis specialist? |  |  |  | 0.04 | χ²=4.66, df=1 |  | 0.22 | χ²=1.52, df=1 |  | 0.04 | χ²=4.28, df=1 | 0.006 | χ²=12.33, df=3
Yes, out of state/country | 86 (29.9) | 32 (26.0) | 2 (7.1) |  |  | 18 (35.3) |  |  | 34 (39.5) |  |  |  | 
No | 202 (70.1) | 91 (74.0) | 26 (92.9) |  |  | 33 (64.7) |  |  | 52 (60.5) |  |  |  | 
How far do you have to travel to see a specialist for endometriosis care? |  |  |  | 0.01 | χ²=10.60, df=3 |  | 0.24 | χ²=4.18, df=3 |  | <0.001 | χ²=43.55, df=4 | <0.001 | χ²=67.96, df=12
Less than 10 miles | 69 (24.0) | 24 (19.5) | 8 (28.6) |  |  | 15 (29.4) |  |  | 22 (25.6) |  |  |  | 
10-25 miles | 82 (28.5) | 28 (22.8) | 13 (46.4) |  |  | 15 (29.4) |  |  | 26 (30.2) |  |  |  | 
26-50 miles | 41 (14.2) | 21 (17.1) | 3 (10.7) |  |  | 7 (13.7) |  |  | 10 (11.6) |  |  |  | 
50-100 miles | 78 (27.1) | 50 (40.7) | 4 (14.3) |  |  | 14 (27.5) |  |  | 10 (11.6) |  |  |  | 
> 100 miles | 18 (6.3) | 0 | 0 |  |  | 0 |  |  | 18 (20.9) |  |  |  | 

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).

 |  | U.S. residents | Non-U.S. residents |  | 
Barriers to accessing care for endometriosis | All (n=288) | Non-Hispanic (n=123) | Hispanic (n=28) | p-value† | Test statistic‡ | Non-Hispanic (n=51) | p-value† | Test statistic‡ | Hispanic (n=86) | p-value† | Test statistic‡ | p-value* | Test statistic‡
Difficulty obtaining a referral to a specialist for endometriosis |  |  |  | 0.04 | χ²=4.04, df=1 |  | 0.01 | χ²=6.37, df=1 |  | <0.001 | χ²=31.61, df=1 | <0.001 | χ²=32.37, df=3
No | 123 (42.7) | 74 (60.2) | 11 (39.3) |  |  | 20 (39.2) |  |  | 18 (20.9) |  |  |  | 
Yes | 165 (57.3) | 49 (39.8) | 17 (60.7) |  |  | 31 (60.8) |  |  | 68 (79.1) |  |  |  | 
Financial constraints |  |  |  | 0.15 | χ²=2.08, df=1 |  | 0.06 | χ²=3.67, df=1 |  | 0.01 | χ²=6.03, df=1 | 0.04 | χ²=7.95, df=3
No | 109 (37.8) | 58 (47.2) | 9 (32.1) |  |  | 16 (31.4) |  |  | 26 (30.2) |  |  |  | 
Yes | 179 (62.2) | 65 (52.8) | 19 (67.9) |  |  | 35 (68.6) |  |  | 60 (69.8) |  |  |  | 
Lack of insurance |  |  |  | 0.09 | χ²=2.85, df=1 |  | 0.34 | χ²=0.91, df=1 |  | 0.41 | χ²=0.67, df=1 | 0.14 | χ²=5.42, df=3
No | 158 (54.9) | 70 (56.9) | 11 (39.3) |  |  | 33 (64.7) |  |  | 44 (51.2) |  |  |  | 
Yes | 130 (45.1) | 53 (43.1) | 17 (60.7) |  |  | 18 (35.3) |  |  | 42 (48.8) |  |  |  | 
Long wait times for appointments |  |  |  | 0.84 | χ²=0.04, df=1 |  | 0.26 | χ²=1.25, df=1 |  | 0.03 | χ²=4.54, df=1 | 0.03 | χ²=8.80, df=3
No | 106 (36.8) | 42 (34.1) | 9 (32.1) |  |  | 13 (25.5) |  |  | 42 (48.8) |  |  |  | 
Yes | 182 (63.2) | 81 (65.9) | 19 (67.9) |  |  | 38 (74.5) |  |  | 44 (51.2) |  |  |  | 
Distance of healthcare providers |  |  |  | 0.21 | χ²=1.57, df=1 |  | 0.79 | χ²=0.07, df=1 |  | 0.19 | χ²=1.75, df=1 | 0.33 | χ²=3.46, df=3
No | 158 (54.9) | 63 (51.2) | 18 (64.3) |  |  | 25 (49.0) |  |  | 52 (60.5) |  |  |  | 
Yes | 130 (45.1) | 60 (48.8) | 10 (35.7) |  |  | 26 (51.0) |  |  | 34 (39.5) |  |  |  | 
Lack of knowledgeable healthcare providers |  |  |  | 0.13 | NA |  | 0.54 | χ²=0.38, df=1 |  | 0.02 | χ²=5.30, df=1 | 0.09 | χ²=6.39, df=3
No | 51 (17.7) | 15 (12.2) | 7 (25.0) |  |  | 8 (15.7) |  |  | 21 (24.4) |  |  |  | 
Yes | 237 (82.3) | 108 (87.8) | 21 (75.0) |  |  | 43 (84.3) |  |  | 65 (75.6) |  |  |  | 
Other |  |  |  | 0.74 | NA |  | 0.67 | χ²=0.19, df=1 |  | 0.83 | χ²=0.04, df=1 | 0.84 | χ²=0.84, df=3
No | 256 (88.9) | 109 (88.6) | 26 (92.9) |  |  | 44 (86.3) |  |  | 77 (89.5) |  |  |  | 
Yes | 32 (11.1) | 14 (11.4) | 2 (7.1) |  |  | 7 (13.7) |  |  | 9 (10.5) |  |  |  | 

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.