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Epidemiology

Prevalence Globally and in the United States

Prevalence estimates vary among different populations of women.1,2

21 - 47%1

Women with subfertility

71 - 87%1

Women with chronic pelvic pain

49 - 75%2

Symptomatic adolescents

Endometriosis impacts ~11% of reproductive age women globally3

World map showing ~190 million women worldwide are impacted by endometriosis

~190 million

women worldwide

US map showing approximately 6.5 million women in the US are impacted by endometriosis

~6.5 million

women in the US

Endometriosis may affect all aspects of patients' lives and represents a significant public health problem with substantial direct and indirect costs.1,2,4

Pain2,4,5

  • Can manifest as dysmenorrhea, nonmenstrual pelvic pain, and dyspareunia
  • Opiate use is 3x higher
  • Associated with depression, anxiety, psychosocial stress, and reduced quality of life

Infertility6

  • 30-50% of women with endometriosis have infertility

Costs1,4

  • Socioeconomic cost is estimated at ~$49 billion per year
  • Lost productivity contributes substantially to the burden
  • Costs are comparable in scale to type 2 diabetes, Crohn's disease, and rheumatoid arthritis

1. Falcone T, et al. Obstet Gynecol. 2018;131:557-571. 2. Zondervan KT, et al. N Engl J Med. 2020;382:1244-1256. 3. Ellis K, et al. Front Glob Womens Health. 2022;3:902371. 4. Simoens D, et al. Hum Reprod. 2012;27:1292-1299. 5. Lamvu G, et al. Obstet Gynecol. 2019;133:1120-1130. 6. Bulletti C, et al. J Assist Reprod Genet. 2010;27:441-447.

Pathophysiology

Endometriosis is a systemic, chronic, heterogeneous condition defined by the implantation of endometrial-like tissue outside the uterus.1,2 Potential pathways that may contribute to pathogenesis include endocrine, immunologic, proinflammatory, and proangiogenic processes.3-6

Disease Manifestations

Endometriotic lesions become vascularized and innervated, leading to scarring and adhesions within the pelvic cavity. Extrapelvic lesions may also occur.3

Disease phenotype and lesion location vary widely, which contributes to the heterogeneity clinicians see across pain, fertility, and diagnostic presentation.7

1. Opoku-Anane J, et al. J Endometr Pelvic Pain Disord. 2020;12:3-9. 2. Falcone T, et al. Obstet Gynecol. 2018;131:557-571. 3. Zondervan KT, et al. N Engl J Med. 2020;382:1244-1256. 4. Malvezzi H, et al. J Transl Med. 2020;18:311. 5. Sourial S, et al. Int J Reprod Med. 2014;2014:179515. 6. Laganà AS, et al. Int J Mol Sci. 2019;20:5615. 7. Chapron C, et al. Nat Rev Endocrinol. 2019;15:666-682.

Diagnosis

Endometriosis remains a diagnostic challenge; evaluation is guided by patient presentation, symptoms, and physical examination.1,2

Disease Phenotypes1,3,4

Superficial peritoneal lesions

Least severe; various colors at multiple locations within the peritoneal cavity.

Ovarian endometriomas (OMA)

Cystic masses arising from endometrial tissue.

Deep-infiltrating endometriosis (DIE)

Most severe; penetrates more than 5 mm below the peritoneal surface or infiltrates surrounding organs.

Clinical Presentation

Risk Factors5-8

  • Family history
  • Early menarche (12 years of age or younger)
  • Frequent or heavy menses
  • Nulliparity
  • Low BMI, alcohol use, autoimmune disease
  • Uterine fibroids

Symptoms2

  • Dysmenorrhea
  • Nonmenstrual pelvic pain
  • Dyspareunia
  • Dyschezia
  • Dysuria
  • Fatigue
  • Infertility
  • Somatosensory amplification

Diagnostic Delay and Challenges

4-11 yrs

Typical delay from symptom onset to diagnosis.9,10

6 in 10

Cases are estimated to be undiagnosed.9

86%

of patients are symptomatic for 7-8 years on average before diagnosis.5

Factors contributing to diagnostic delay include disease heterogeneity, nonspecific symptoms, asymptomatic presentation, lack of available biomarkers, continued reliance on invasive methods for confirmation, and societal stigma.1,2,11,12

The long interval between symptom onset and diagnosis can lead to prolonged discomfort, reduced quality of life, and central sensitization, which may be difficult to treat and manage.9,10,13,14

Current Recommendations to Guide Diagnosis of Endometriosis (ACOG 2026)15

  • Clinical diagnosis through symptom-based assessment and/or physical examination can support empiric medical treatment initiation.
  • Transvaginal ultrasonography is the recommended imaging modality for clinically suspected endometriosis.
  • Pelvic MRI is suggested when further characterization of deep endometriosis is needed to guide treatment.
  • For patients with suspected endometriosis, the decision to proceed with diagnostic laproscopy or empiric medical treatment should be individualized based on shared decision-making of risks and benefits.

BMI, body mass index; DIE, deep-infiltrating endometriosis; MRI, magnetic resonance imaging; OMA, ovarian endometrioma.

1. Chapron C, et al. Nat Rev Endocrinol. 2019;15:666-682. 2. Zondervan KT, et al. N Engl J Med. 2020;382:1244-1256. 3. Laganà AS, et al. Int J Mol Sci. 2019;20:5615. 4. ESHRE Guideline Endometriosis. https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline (accessed February 15, 2022). 5. Falcone T, et al. Obstet Gynecol. 2018;131:557-571. 6. Nnoaham KE, et al. Fertil Steril. 2012;98:702-712. 7. Shigesi N, et al. Hum Reprod Update. 2019;25:486-503. 8. Lin KY, et al. PLoS One. 2021;16:e0256772. 9. Agarwal SK, et al. Am J Obstet Gynecol. 2019;220:354.e1-354.e12. 10. Soliman AM, et al. J Womens Health. 2017;26(7):788-971. 11. Nisenblat V, et al. Cochrane Database Syst Rev. 2016;2:CD009591. 12. As-sanie S, et al. Am J Obstet Gynecol. 2019;221:86-94 13. Latremoliere A, et al. J Pain. 2009;10:895-926. 14. Surrey E, et al. Adv Ther. 2020;37,1087-1099. 15. Committee on Clinical Practice Guidelines-Gynecology. Obstet Gynecol. 2026;147:432-448.

Resources

Endometriosis Resources

Uterine Health Guide

External education resource focused on endometriosis and patient support.

View Resource

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