Endometriosis epidemiology and demographics

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Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1]; Associate Editor(s)-in-Chief: Joseph Nasr, M.D.[2] Aravind Kuchkuntla, M.B.B.S[3]

Overview

Endometriosis affects approximately 11,000 per 100,000 females of reproductive age. Endometriosis affects approximately 1 in 10 individuals of reproductive age.[1] Endometriosis is more common in the Caucasian population than the African American population. Endometriosis accounts for the majority of patients with chronic pelvic pain and infertility.

More recent global estimates suggest that the prevalence of endometriosis among women aged 15–49 years is 7% (95% uncertainty interval, 6.0%–8.0%).[1]

Among individuals undergoing laparoscopy for chronic pelvic pain, endometriosis is identified in approximately 33% to 50% of cases.[2][3]

Among individuals with infertility, endometriosis is identified in approximately 20% to 50% of cases.[4]

Epidemiology and Demographics

  • Epidemiological data for endometriosis is scarce due to the following reasons:[5]
    • Endometriosis includes a wide spectrum of symptoms and pathologic findings.
    • Endometriosis is asymptomatic in the early stages and a diagnosis is usually made for the first time as a part of infertility work up.
    • True prevalence may be underestimated due to prolonged diagnostic delay and reliance on surgical confirmation for definitive diagnosis.[6]

Prevalence

  • Worldwide, the prevalence of endometriosis is approximately 11,000 per 100,000 females in reproductive age group.[7]
  • Endometriosis accounts for 33,000 per 100,000 cases with chronic pelvic pain and 17,000 per 100,000 cases with infertility.[8]
  • In population-based analyses, the estimated prevalence among women aged 15–49 years is 7% (95% uncertainty interval, 6.0%–8.0%).[1]
  • Among individuals evaluated surgically for chronic pelvic pain, prevalence estimates range from 33% to 50%.[2][3]
  • Among individuals with infertility, endometriosis is present in approximately 20% to 50% of cases.[4]
  • Endometriosis is also a common finding among adolescents undergoing surgical evaluation for chronic pelvic pain[2][3]
  • Endometriosis may also be incidentally identified during surgical procedures performed for other indications.[2][3]

Diagnostic Delay

  • The mean time from symptom onset to diagnosis is approximately 7 years.[6]
  • Diagnostic delay may result from normalization of menstrual pain, symptom overlap with other conditions, and limited access to specialized care.

Race

  • Endometriosis is more common in the Caucasian population than the African American population.[5]

Age

  • Endometriosis primarily affects women in the reproductive age group (usually between 15 and 45 years of age).  
  • The peak age of diagnosis is between 25 and 35 years.  
  • Although most commonly diagnosed in adults, endometriosis has been reported in adolescents and in individuals with obstructive Müllerian anomalies.[9]

Gender

Genetic Predisposition

  • Twin studies estimate the heritability of endometriosis to be approximately 50%.[10][11]
  • Among sisters of affected individuals, the relative risk of endometriosis is 5.2 (95% CI, 3.4–7.2).[12]
  • Although familial clustering is observed, no single gene accounts for the majority of cases.

Risk Factors

  • Early menarche (before age 12 years) is associated with increased risk of endometriosis.[13]
  • Short menstrual cycle length (<28 days) is associated with increased risk.[14]
  • Lower body mass index has been associated with increased risk.[15]
  • Nulliparity is associated with increased risk of endometriosis.[16]
  • Among individuals with obstructive Müllerian anomalies, the prevalence of endometriosis is 47% (95% CI, 36%–58%).[9]

References

  1. 1.0 1.1 1.2 Shim JY, Laufer MR, King CR, Lee TTM, Einarsson JI, Tyson N. Evaluation and management of endometriosis in the adolescent. Obstet Gynecol.2024;143(1):44-51.
  2. 2.0 2.1 2.2 2.3 Lin T, Allaire C, As-Sanie S, et al; WERF EPHect Physical ExaminationWorking Group.World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project, V: physical examination standards in endometriosis research. Fertil Steril. 2024;122(2):304-315. doi:10.1016/j.fertnstert.2024.03.007
  3. 3.0 3.1 3.2 3.3 Singh SS, Allaire C, Al-Nourhji O, et al. Guideline No. 449: diagnosis and impact of endometriosis—a canadian guideline. J Obstet Gynaecol Can. 2024;46(5):102450. doi:10.1016/j.jogc.2024.102450
  4. 4.0 4.1 Hamdan M, Omar SZ, Dunselman G, Cheong Y. Influence of endometriosis on assisted reproductive technology outcomes: a systematic review and meta-analysis. Obstet Gynecol. 2015;125(1):79-88. doi:10.1097/AOG.0000000000000592
  5. 5.0 5.1 Cramer DW, Missmer SA (2002). "The epidemiology of endometriosis". Ann N Y Acad Sci. 955: 11–22, discussion 34-6, 396–406. PMID 11949940.
  6. 6.0 6.1 Allaire C, BedaiwyMA, Yong PJ. Diagnosis and management of endometriosis. CMAJ. 2023;195(10):E363-E371. doi:10.1503/cmaj.220637
  7. Buck Louis, Germaine M.; Hediger, Mary L.; Peterson, C. Matthew; Croughan, Mary; Sundaram, Rajeshwari; Stanford, Joseph; Chen, Zhen; Fujimoto, Victor Y.; Varner, Michael W.; Trumble, Ann; Giudice, Linda C. (2011). "Incidence of endometriosis by study population and diagnostic method: the ENDO study". Fertility and Sterility. 96 (2): 360–365. doi:10.1016/j.fertnstert.2011.05.087. ISSN 0015-0282.
  8. McDonald JS (2001). "Diagnosis and treatment issues of chronic pelvic pain". World J Urol. 19 (3): 200–7. PMID 11469608.
  9. 9.0 9.1 Vercellini P, Salmeri N, Somigliana E, et al. Müllerian anomalies and endometriosis as potential explanatory models for the retrograde menstruation/implantation and the embryonic remnants/celomic metaplasia pathogenic theories: a systematic review and meta-analysis. Hum Reprod.2024;39(7):1460-1470. doi:10.1093/humrep/deae086
  10. Saha R, Pettersson HJ, Svedberg P, et al. Heritability of endometriosis. Fertil Steril. 2015;104(4):947-952. doi:10.1016/j.fertnstert.2015.06.035
  11. Treloar SA, O’Connor DT, O’Connor VM, Martin NG. Genetic influences on endometriosis in an Australian twin sample. Fertil Steril. 1999;71(4):701- 710. doi:10.1016/S0015-0282(98)00540-8
  12. Stefansson H, Geirsson RT, Steinthorsdottir V, et al. Genetic factors contribute to the risk of developing endometriosis. Hum Reprod. 2002;17(3):555-559. doi:10.1093/humrep/17.3.555
  13. LuMY, Niu JL, Liu B. The risk of endometriosis by early menarche is recently increased: ameta-analysis of literature published from 2000 to 2020. Arch Gynecol Obstet. 2023;307(1):59-69. doi:10.1007/s00404-022-06541-0
  14. Wei M, Cheng Y, Bu H, Zhao Y, ZhaoW. Length of menstrual cycle and risk of endometriosis: ameta-analysis of 11 case-control studies. Medicine (Baltimore). 2016;95(9):e2922. doi:10.1097/MD.0000000000002922
  15. Liu Y, ZhangW. Association between body mass index and endometriosis risk: ameta-analysis. Oncotarget. 2017;8(29):46928-46936. doi:10.18632/oncotarget.14916
  16. Missmer SA, Hankinson SE, Spiegelman D, et al. Reproductive history and endometriosis among premenopausal women. Obstet Gynecol. 2004;104 (5 Pt 1):965-974. doi:10.1097/01.AOG.0000142714.54857.f8