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The Evidence

The Case for Recognition

The data behind a disease the world has overlooked for a century.

190 million women.2 Seven to ten years — average diagnostic delay.3,4 And still no screening test to find it.2

Chapter 01 — Diagnostic Delay

The Longest Diagnostic Delay

7–10 years — the average wait for a diagnosis. Longer than any other common chronic disease.
Disease Average Diagnostic Delaydrawn to one common time scale The consequences of diagnosis delay.
  • Rheumatoid Arthritis5 3–6 months Consequences of delayJoint pain, inflammation and damage, disability, reduced quality of life
  • Multiple Sclerosis6 2–6 months Consequences of delayNeurological damage, disability progression, reduced quality of life
  • Inflammatory Bowel Disease7 6–12 months Consequences of delayBowel damage, strictures, fistulas, malnutrition, increased cancer risk
  • Coronary Artery Disease8 days to weeks Consequences of delayHeart attack, heart failure, life-threatening complications
  • Breast Cancer9 weeks to months Consequences of delayCancer progression, more aggressive treatment, reduced survival
  • Type 1 Diabetes10 days to weeks Consequences of delayDiabetic ketoacidosis, hospitalization, long-term complications
  • Endometriosis3,4 7–10 years

Ranges reflect averages reported in population-based studies and clinical guidelines. Individual experiences may vary. Source data compiled May 2025.

There is no screening test for endometriosis — after over 100 years of dealing with it.2

Chapter 02 — Funding & Burden

Massive Burden. Minimal Investment.

Nearly $100 Billion in annual costs. Only $28 Million in NIH funding.
Endometriosis, U.S. per year Drawn to one common dollar scale$28 million is 0.03% of $98.5 billion — the sliver is the honest size
  • Total economic burden $98.5 B
  • NIH research funding19,20 $28 M

Direct burden $49.6 B11–17 + indirect burden $48.9 B11,12,15,19 = $98.5 B of total economic burden a year in the U.S. All dollar amounts are approximate. B = Billions | M = Millions.

Only $0.28M in NIH research funding is invested for every $1 billion of economic burden from endometriosis — compared to a range of $2.9M–$42.3M for other major diseases.19,20

Disease NIH Funding per $1 Billion of Total Economic Burden ($M)19,20scaled to the largest value (Ovarian Cancer, $42.3M)
  • Endometriosis $0.28 M
  • Breast Cancer $18.3 M
  • Ovarian Cancer $42.3 M
  • Endometrial Cancer $32.6 M
  • Prostate Cancer $20.0 M
  • HIV/AIDS $15.7 M
  • Heart Disease (Cardiovascular Disease) $4.5 M
  • Diabetes $2.9 M

All dollar amounts are approximate. B = Billions | M = Millions. Endometriosis is listed first, as in the source table — its sliver against the field is the finding.

  • 190 Million women affected worldwide2
  • ~$100 Billion annual U.S. economic cost
  • ~$28 Million U.S. NIH research funding

The source graphic prints 176 million affected worldwide; shown here as 190 million per the WHO fact sheet (reference 2), at GEM’s direction.

It’s time to close this gap.

Chapter 03 — Quality of Life

A Quality-of-Life Impact Comparable to Other Major Chronic Diseases

A quality-of-life score of 42 — below type 2 diabetes, below rheumatoid arthritis, below breast cancer.

Studies using validated quality-of-life tools show that endometriosis has a negative impact on daily life similar to, and in some cases worse than, other major chronic diseases.21–26

Disease Quality-of-Life Score (0–100)21–26higher scores = better quality of life — lower scores indicate worse quality of life
  • SF-36 Physical Health (PCS Score)
  • Endometriosis 42
  • Rheumatoid Arthritis 45
  • Type 2 Diabetes 46
  • EQ-5D Utility Index (Score)
  • Congestive Heart Failure 41
  • COPD (Chronic Obstructive Pulmonary Disease) 37
  • Breast Cancer 52

Scores from validated tools — higher scores = better quality of life; lower scores indicate worse quality of life. Studies use SF-36 (PCS) and EQ-5D tools. The two instruments score differently and are not directly interchangeable — rows are grouped by tool above; the source graphic presents all six on a single 0–100 scale. Within the SF-36 group, endometriosis scores lowest.

  • 190 Million women and girls affected worldwide, approximately2
  • 7–10 Years average diagnostic delay, leading to disease progression and greater suffering3,4
  • Every Aspect of a woman’s life impacted — work, relationships, fertility, mental health, and overall well-being
  • Enormous Burden carried economically — yet research investment remains dramatically inadequate

Endometriosis has a quality-of-life impact comparable to other major chronic diseases. Its burden extends far beyond gynecologic symptoms. It is a serious, chronic, systemic disease — it deserves recognition. It deserves action.

Chapter 04 — Work Productivity

Endometriosis & Work Productivity

65% impairment at work. Higher than Crohn’s disease, rheumatoid arthritis or asthma.

The hidden cost is often presenteeism: women are at work, but pain, fatigue, and symptoms reduce performance.27–31

  • Global Study of Women’s Health 10.8 hrs/week average work productivity lost by affected women, mainly reduced effectiveness while working
  • Endometriosis registry study 64% overall work productivity loss during symptomatic weeks; 65% impairment while working
  • Daily activities 60% activity impairment reported by women with endometriosis symptoms

Endometriosis can impair work productivity at levels seen in major chronic diseases.

Disease Impairment While Working (%)27–31WPAI presenteeism metric — higher % = greater impairment
  • Endometriosis (symptomatic) 65%
  • Ankylosing spondylitis 41.7%
  • Crohn’s disease 40.5%
  • IBS 32.4%
  • Rheumatoid arthritis 24.0%
  • Asthma 20.0%
  • Psoriasis 15.5%

Impairment while working (%) — WPAI presenteeism metric; higher % = greater impairment. Bars are drawn on the source’s 0–70% axis. Use this chart as an advocacy visual, not a head-to-head clinical trial: studies used different populations and methods, but the evidence consistently shows severe productivity loss.

Endometriosis is not “just painful periods.” It can reduce work capacity at levels seen in serious chronic diseases — affecting income, careers, education, families, and mental health.

Chapter 05 — Psychological Impact

Psychological Impact Comparable to Serious Chronic Disease

Depression, anxiety, self-harm and suicidal behavior should be recognized as part of the disease burden — not as separate afterthoughts.

Endometriosis — adjusted risk versus women without endometriosis32,33

  • +38% anxiety — adjusted risk versus women without endometriosis
  • +48% depression — adjusted risk versus women without endometriosis
  • ≈2x self-directed violence — adjusted risk versus women without endometriosis

Large U.S. matched cohort: mental-health events occurred more often after clinically recognized endometriosis diagnosis. Self-directed violence includes suicide attempt / intentional self-harm codes in claims data.

If you are struggling with thoughts of self-harm or suicide, you are not alone — please reach out to a mental-health professional or a local crisis line in your country. GEM can help point you toward support: contact us.

Comparison: serious chronic disease.

Disease Reported Burden34–36different studies use different measures — see the interpretation note below Measure
  • Chronic pain ~1 in 4 recent suicidal ideation — meta-analysis
  • Rheumatic diseases 26% / 12% suicidal ideation / attempt — meta-analysis
  • Diabetes ↑ risk depression and suicidality — systematic review

Interpretation: different studies use different measures; the consistent message is that endometriosis carries a serious mental-health burden.

Clinical implication: endometriosis care should include routine attention to pain, mood, isolation, self-harm risk and mental-health support.

Every Story Matters. Every Voice Counts. Every Woman Deserves Better.

View Sources
  1. World Endometriosis Society, Global Burden of Endometriosis Report. 2021.
  2. World Health Organization (WHO). Endometriosis. Fact Sheet. 2023.
  3. Noaham KE, et al. Time to diagnosis of endometriosis: a systematic review and meta-analysis. Fertil Steril. 2011;95(3):1306–1316.e4.
  4. Zondervan KT, Becker CM, Missmer SA. Endometriosis. Nat Rev Dis Primers. 2018;4:9.
  5. American College of Rheumatology, Rheumatoid Arthritis: Early Diagnosis. 2021.
  6. National Multiple Sclerosis Society. Diagnosis. Accessed 2023.
  7. Crohn’s & Colitis Foundation. Diagnostic Delay in Crohn’s Disease and Ulcerative Colitis. 2022.
  8. American Heart Association. Coronary Artery Disease: Diagnosis and Treatment. 2023.
  9. American Cancer Society. Breast Cancer: Early Detection and Diagnosis. 2023.
  10. American Diabetes Association. Classification and Diagnosis of Diabetes: Standards of Care in Diabetes—2024.
  11. Simenes S, Dumnsensa GA, Girksen C, et al. Hum Reprad Ileprant. 2021;18(3):395–457.
  12. Eha K, Feldberg K, Mao J, et al. Front Flob Dicmess Hewle. 2922;3:386675.
  13. American Diabetes Association. Diabetes Care. 2023;46(5):1122–1140.
  14. American Heart Association. Circulation. 2024;198:e347–e913.
  15. Mariotto AK, Kraocfl RR, Shao Y, et al. J Natl Cancer Inst. 2011;201:117–138.
  16. Zhu J, Devine S, Deving Y, et al. J Natl Cancer Inst. 2021;113:1173–1172.
  17. Tangke POL, Chu KC, Hirth RH, et al. J Natl Cancer Inst. 2020;112(10):558–955.
  18. NIH Research, Condition, and Disease Categorization (RCDC) System — FY 2024. report.nih.gov.
  19. Leigh JP. J Pharmacorreciation. 2020;20(9):699–903.
  20. National Cancer Institute, NCI Fact Book 2024 — Research funding. cancer.gov/about-nci/budget-fact-book.
  21. Dunselman GAJ, et al. Hum Reprod Update. 2014;20(4):449–471.
  22. Soliman AM, et al. BJOG. 2012;120(1):35–41.
  23. Culley L, et al. Value Health. 2016;19(6):A232.
  24. Osuga Y, et al. Fertil Steril. 2010;93(1):155–158.
  25. Stratford PW, et al. J Clin Epidemiol. 1997;50(5):501–509.
  26. Brazier JE, et al. Qual Life Res. 1998;7(6):521–535.
  27. Nnoaham KE, et al. Hum Reprod. 2011;26:129–138.
  28. Soliman AM, et al. Best Pract Res Clin Obstet Gynaecol. 2018;51:13–25.
  29. Fourquet J, et al. Fertil Steril. 2011;96:366–373.
  30. Zhang W, et al. Arthritis Rheum. 2010;62:2563–2571.
  31. American Diabetes Association. Diabetes Care. Economic Costs of Diabetes in the U.S.
  32. Estes SI, et al. Am J Epidemiol. 2021;190(5):843–852.
  33. Thiel L, et al. Obstet Gynecol. 2025. Risk of self harm after endometriosis diagnosis.
  34. Kwon C Y, Lee B. Front Psychol. 2023;14:1217299.
  35. Li Z, et al. Psychol Health Med. 2018;23(9):1025–1036.
  36. Elmasrydy R, et al. J Clin Med. 2018;7(11):445.

Evidence this clear demands action.

Join patients, clinicians, researchers, and advocates working to shorten diagnosis, expand research, and make endometriosis impossible to ignore.

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