Manuscript Type: Narrative Review / Cost-of-Illness Synthesis

Authors: Novasono Corporation (original synthesis of peer-reviewed literature)

Date: January 2026

Funding / Conflicts of Interest: None declared

ABSTRACT

Objective: Diagnostic delays in endometriosis average 4–7+ years and may generate substantial prediagnosis healthcare costs through fragmented, all-cause care. This narrative synthesis quantifies the prediagnosis and overall economic burden in the United States, drawing from multiple claims-based studies to evaluate the association between delay length and direct medical costs.

Methods: Narrative synthesis of key US retrospective claims analyses published 2015–2020 (primarily Surrey et al. 2020, Fuldeore et al. 2015, and Soliman et al. 2018) supplemented by systematic reviews and national burden estimates. Studies used large commercial/Medicaid databases (MarketScan, Optum) and reported all-cause and endometriosis-related healthcare resource utilization (HRU) and direct costs (inflation-adjusted where available).

Results: Prediagnosis all-cause costs increase markedly with diagnostic delay: mean 5-year costs were $21,489 (short delay ≤1 year), $30,030 (intermediate 1–3 years), and $34,460 (long delay 3–5 years; p<0.001) in Surrey et al. (n=11,793). Fuldeore et al. reported incremental prediagnosis costs of $7,028 over 5 years versus matched controls. Ambulatory/outpatient visits drove 57.7% of expenditures and rose with delay length; emergency department and inpatient use were also significantly higher in longer-delay cohorts. Post-diagnosis, first-year annual direct costs frequently exceed $13,000–$16,573 (vs. ~$3,700–$4,700 controls), with 10-year incremental burden reaching $26,305. Indirect costs (productivity loss) often comprise 65–84% of total burden, contributing to national estimates of $78–119 billion annually.

Conclusion: Longer diagnostic delays consistently amplify prediagnosis all-cause costs through repeated, uncoded symptom management. Earlier recognition represents a modifiable, high-value opportunity to reduce payer expenditures, improve outcomes, and lower societal burden. Critical gaps remain in recent data, indirect-cost measurement, and intervention studies.

Keywords: Endometriosis; diagnostic delay; healthcare costs; prediagnosis burden; economic burden; claims data.

INTRODUCTION

Endometriosis affects approximately 10% of reproductive-age women worldwide and is a leading cause of chronic pelvic pain, dysmenorrhea, dyspareunia, and infertility. Symptoms are nonspecific and overlap with other conditions, resulting in diagnostic delays of 4–7+ years in the United States. These delays not only worsen quality of life and disease progression but also generate substantial economic inefficiency through repeated healthcare encounters coded under symptom or comorbid diagnoses rather than endometriosis itself.

While post-diagnosis costs are well-characterized (often $13,000–$16,500 annually in the first year, driven by surgery and pharmacotherapy), the prediagnosis period has received less systematic attention. This synthesis integrates multiple high-quality US claims studies to provide a broader, critical analysis of the prediagnosis burden, incremental costs versus controls, and the dose-response relationship with delay length. It also contextualizes findings against post-diagnosis patterns and national burden estimates, highlighting methodological strengths, limitations, and policy implications.

METHODS

This is a narrative synthesis of peer-reviewed US claims-based cost-of-illness studies published 2015–2020. Primary sources include:

-Surrey et al. (2020): Optum Research Database, n=11,793 women aged 18–49; stratified by diagnostic delay (short ≤1 yr, intermediate 1–3 yr, long 3–5 yr) from first symptom claim.

-Fuldeore et al. (2015): MarketScan Commercial database; 5 years pre- and post-diagnosis longitudinal analysis versus matched controls.

-Soliman et al. (2018): Large commercial claims (n=113,506 endometriosis patients); 12-month post-diagnosis direct and indirect costs.

Supporting data come from systematic reviews of direct/indirect costs and national burden estimates. All studies reported direct medical costs (plan + patient-paid, inflation-adjusted where noted) and HRU (ambulatory, emergency, inpatient). Critical evaluation focused on consistency of findings, claims-data limitations (e.g., coding accuracy, insured populations only), and gaps in indirect costs and intervention effects.

RESULTS

Prediagnosis Costs and the Impact of Diagnostic Delay

Surrey et al. (2020) provides the most granular delay-stratified analysis. Mean 5-year all-cause costs rose sharply with delay:

-Short delay: $21,489 (per patient yearly)

-Intermediate: $30,030 (per patient yearly)

-Long delay: $34,460 (60% higher than short-delay cohort; p<0.001 for all comparisons). (per patient yearly).

      All-cause healthcare costs during the pre-diagnosis period averaged $28,376 per patient, yearly. (Diagnostic delays in endometriosis average 4–7+ years).

Endometriosis-related costs (symptom-coded or treatment-related claims) accounted for only ~12.5% of the total (~$3,533 overall), illustrating how the majority of prediagnosis spending occurs under nonspecific codes. Ambulatory visits (57.7% of costs) increased from 47.3 (short) to 69.1 (long) per patient (p<0.001); emergency department and inpatient utilization followed the same gradient.

Fuldeore et al. (2015) corroborates this pattern in a 10-year longitudinal design: incremental all-cause costs versus controls were $7,028 over 5 prediagnosis years (annualized ~$1,406 extra per year), with costs elevated every pre-index year and spiking further post-diagnosis. Total 10-year incremental burden reached $26,305.

Across studies, longer delays correlated with higher comorbidity burdens (fatigue, depression/anxiety, ovarian cysts, migraines), amplifying fragmented care and all-cause utilization.

Post-Diagnosis Costs and First-Year Spike

Post-diagnosis costs consistently show a sharp peak in the first year. Soliman et al. (2018) reported mean annual adjusted direct costs of $16,573 versus $4,733 in controls (incremental $10,002; p<0.005), with ~two-thirds of patients undergoing surgery within 12 months. Fuldeore et al. found first-year costs of $13,199 versus $3,747 in controls. Subsequent years remained elevated but lower (~$3,400–$6,700 annually).

Broader National and Indirect Burden

Systematic reviews estimate annual direct costs per patient at $12,000+ in the US, with total (direct + indirect) national burden ranging $78–119 billion. Indirect costs (absenteeism, presenteeism) frequently account for 65–84% of the total societal burden and are higher in previously diagnosed versus newly diagnosed patients, underscoring the long-term productivity impact of delayed care.

Table 1. Selected United States Claims Studies-Direct cost estimated

Study                                Population / Period              Prediagnosis (5-yr all-cause)               Post-diagnosis (1-yr direct)         Incremental vs. Controls

Surrey et al. 2020            Optum, delay-stratified                    $21k–$34k                                              Not reported                            Delay-dependent (up to 60% higher)

Fuldeore et al. 2015       MarketScan, longitudinal            Incremental $7,028                                       $13,199                                  10-yr total incremental $26,305

Soliman et al. 2018         Commercial claims                        Not stratified                                              $16,573                                   $10,002 annual

DISCUSSION — Critical Analysis

Consistency and Strength of Evidence

Findings across independent claims databases (Optum, MarketScan) are remarkably consistent: diagnostic delays drive a clear dose-response increase in prediagnosis all-cause HRU and costs, predominantly ambulatory-driven. The incremental burden versus controls is robust ($7,000–$10,000+ prediagnosis), and first-year post-diagnosis spikes are reproducible. This convergence strengthens causal inference that earlier diagnosis could avert inefficient care cycles.

Methodological Limitations and Biases

-Claims data constraints: Reliance on ICD codes risks misclassification; prediagnosis spending is “hidden” under symptom codes, potentially underestimating true endometriosis-attributable costs. Studies capture only insured populations, excluding Medicaid/uninsured disparities and out-of-pocket expenses.

-Temporal factors: Data largely pre-date recent awareness campaigns and non-invasive diagnostics; contemporary costs may be higher due to inflation or lower due to improved pathways.

-Indirect costs under-measured: Productivity losses dominate total burden but are variably captured; presenteeism is especially challenging to quantify.

-Causality vs. correlation: Longer delays may reflect more severe disease or comorbidities that independently drive costs; however, the consistent gradient across studies supports delay as a modifiable driver.

Comparisons and Gaps

Prediagnosis patterns mirror other chronic pelvic conditions, but endometriosis shows uniquely high post-diagnosis surgical utilization. Research gaps include: (1) real-world evaluation of interventions to shorten delays (e.g., biomarker/imaging pathways), (2) updated post-2020 data reflecting telehealth and awareness efforts, and (3) equity analyses in diverse populations.

Policy and Clinical Implications

From a payer perspective, reducing average delay by even 1–2 years could yield substantial savings in fragmented prediagnosis care. Value-based models incentivizing timely specialist referral, standardized symptom screening, and non-invasive diagnostics warrant investment. Clinically, earlier mechanism-focused evaluation (beyond empiric hormonal therapy) could interrupt the cycle of repeated visits and improve long-term outcomes.

CONCLUSION

Diagnostic delays in endometriosis generate substantial, modifiable prediagnosis costs—reaching $34,460 over 5 years in long-delay patients—driven by ambulatory overuse and largely uncoded as endometriosis. Multiple independent US claims studies converge on a clear economic signal: earlier diagnosis reduces both prediagnosis inefficiency and the first-year post-diagnosis spike, while lowering overall societal burden estimated at $78–119 billion annually. Accelerating diagnosis through awareness, policy incentives, and innovative tools represents a high-return strategy for patients, payers, and society.

REFERENCES:

-Surrey E, et al. Impact of Endometriosis Diagnostic Delays on Healthcare Resource Utilization and Costs. Adv Ther. 2020;37:1087-1099.

-Fuldeore M, et al. Healthcare utilization and costs in women diagnosed with endometriosis before and after diagnosis. Fertil Steril. 2015;103:142-150.

-Soliman AM, et al. Real-world evaluation of direct and indirect economic burden among endometriosis patients in the United States. Adv Ther. 2018;35:408-423. (Additional systematic reviews and national estimates cited inline.)