Endometriosis is a chronic disease that may progress over time1-3
Women may experience a delay from onset of symptoms to diagnosis of up to 6-10 years4,5
Delay in endometriosis diagnosis is often 2-sided
At the Patient Level
Women may downplay their endometriosis pain symptoms
- Many women with undiagnosed endometriosis become accustomed to painful menstrual cycles at an early age6
- According to interview-based European and Australian studies, women may have been told to ignore pain symptoms by their mothers, friends, and others7,8*
At the Medical Level
There are challenges to diagnosing endometriosis
- Intermittent contraception use can cause hormonal suppression of symptoms7
- Wide range of symptoms that overlap with other conditions9,10
- Reliance on surgical diagnosis7
- Lack of nonsurgical biomarkers10
- Often an underappreciated condition4,11
- May be dismissed as routine menstrual pain7
In a 2014 US market research survey of ~300 women aged 18 to 50 with diagnosed endometriosis, nearly half (45%) did not mention their symptoms to their doctor because other people told them they were “normal”12
In a survey of women later diagnosed with endometriosis,~60% of women were told by ≥1 physician—including gynecologists as well as PCPs—that nothing was wrong13†
Early diagnosis and management may help reduce uncertainty, discomfort, disease progression, and later complications1-3,7,9,10
*Based on a qualitative, interview-based study of 32 women in England aged 16 to 47, 28 of whom were subsequently diagnosed with endometriosis, and qualitative, in-depth interviews of 20 Australian women aged 24 to 55 with endometriosis.
†Results from a 1998 cross-sectional, self-reported survey of women with surgically diagnosed endometriosis that examined the length of time between symptom onset and diagnosis. Subjects completed a 10-page survey developed by the Endometriosis Association.
1. American College of Obstetricians and Gynecologists. Practice bulletin no. 114: management of endometriosis. Obstet Gynecol. 2010;116(1):223-236. 2. Practice Committee of the American Society for Reproductive Medicine. Treatment of pelvic pain associated with endometriosis: a committee opinion. Fertil Steril. 2014;101(4):927-935. 3. Asante A, Taylor RN. Endometriosis: the role of neuroangiogenesis. Ann Rev Physiol. 2011;73:163-182. 4. Nnoaham KE, Hummelshoj L, Webster P, et al; World Endometriosis Research Foundation Global Study of Women’s Health consortium. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011;96(2):366-373. 5. Giudice LC. Clinical practice: endometriosis. N Engl J Med. 2010;362(25):2389-2398 6. Taylor MM. Endometriosis—a missed malady. AORN J. 2003;77(2):297-313. 7. Ballard K, Lowton K, Wright J. What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril. 2006;86(5):1296-1301. 8. Seear K. The etiquette of endometriosis: stigmatisation, menstrual concealment and the diagnostic delay. Soc Sci Med. 2009;69(8):1220-1227. 9. Mao AJ, Anastasi JK. Diagnosis and management of endometriosis: the role of the advanced practice nurse in primary care. J Am Acad Nurse Pract. 2010;22(2):109-116. 10. Nisenblat V, Bossuyt PM, Shaikh R, et al. Blood biomarkers for the non-invasive diagnosis of endometriosis. Cochrane Database Syst Rev. 2016;(5):CD012179. doi:10.1002/14651858. 11. Association of Professors of Gynecology and Obstetrics. Diagnosis & Management of Endometriosis: Pathophysiology to Practice. Education Series on Women’s Health Issues. 12. Data on File, AbbVie Inc, North Chicago, IL. US Diagnosed endometriosis consumer/patient research. 2014. 13. Greene R, Stratton P, Cleary SD, Ballweg ML, Sinaii N. Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. Fertil Steril. 2009;91(1):32-39.