Incidence of endometriosis by study population and diagnostic method: The ENDO study

Division of Epidemiology, Statistics, and Prevention Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Rockville, Maryland 20852, USA.
Fertility and sterility (Impact Factor: 4.59). 06/2011; 96(2):360-5. DOI: 10.1016/j.fertnstert.2011.05.087
Source: PubMed


To estimate the incidence of endometriosis in an operative cohort of women seeking clinical care and in a matched population cohort to delineate more fully the scope and magnitude of endometriosis in the context of and beyond clinical care.
Matched-exposure cohort design.
Surgical centers in the Salt Lake City, Utah, and San Francisco, California, areas.
The operative cohort comprised 495 women undergoing laparoscopy/laparotomy between 2007 and 2009, and the population cohort comprised 131 women from the surgical centers' catchment areas.
Incidence of endometriosis by diagnostic method in the operative cohort and by pelvic magnetic resonance imaged (MRI) disease in the population cohort.
Endometriosis incidence in the operative cohort ranged by two orders of magnitude by diagnostic method: 0.7% for only histology, 7% for only MRI, and 41% for visualized disease. Endometriosis staging was skewed toward minimal (58%) and mild disease (15%). The incidence of MRI-diagnosed endometriosis was 11% in the population cohort.
Endometriosis incidence is dependent on the diagnostic method and choice of sampling framework. Conservatively, 11% of women have undiagnosed endometriosis at the population level, with implications for the design and interpretation of etiologic research.

185 Reads
  • Source
    • "Data for this study was obtained from the Endometriosis, Natural History, Diagnosis, and Outcomes (ENDO) Study (Buck Louis et al., 2011). For this secondary analysis, we restricted the study population to the operative cohort. "
    [Show abstract] [Hide abstract]
    ABSTRACT: What are the pain characteristics among women, with no prior endometriosis diagnosis, undergoing laparoscopy or laparotomy regardless of clinical indication? Women with surgically visualized endometriosis reported the highest chronic/cyclic pain and significantly greater dyspareunia, dysmenorrhea, and dyschezia compared with women with other gynecologic pathology (including uterine fibroids, pelvic adhesions, benign ovarian cysts, neoplasms and congenital Müllerian anomalies) or a normal pelvis. Prior research has shown that various treatments for pain associated with endometriosis can be effective, making identification of specific pain characteristics in relation to endometriosis necessary for informing disease diagnosis and management. The study population for these analyses includes the ENDO Study (2007-2009) operative cohort: 473 women, ages 18-44 years, who underwent a diagnostic and/or therapeutic laparoscopy or laparotomy at one of 14 surgical centers located in Salt Lake City, UT or San Francisco, CA. Women with a history of surgically confirmed endometriosis were excluded. Endometriosis was defined as surgically visualized disease; staging was based on revised American Society for Reproductive Medicine (rASRM) criteria. All women completed a computer-assisted personal interview at baseline specifying 17 types of pain (rating severity via 11-point visual analog scale) and identifying any of 35 perineal and 60 full-body front and 60 full-body back sites for which they experienced pain in the last 6 months. There was a high prevalence (≥30%) of chronic and cyclic pelvic pain reported by the entire study cohort regardless of post-operative diagnosis. However, women with a post-operative endometriosis diagnosis, compared with women diagnosed with other gynecologic disorders or a normal pelvis, reported more cyclic pelvic pain (49.5% versus 31.0% and 33.1%, P < 0.001). Additionally, women with endometriosis compared with women with a normal pelvis experienced more chronic pain (44.2 versus 30.2%, P = 0.04). Deep pain with intercourse, cramping with periods, and pain with bowel elimination were much more likely reported in women with versus without endometriosis (all P < 0.002). A higher percentage of women diagnosed with endometriosis compared with women with a normal pelvis reported vaginal (22.6 versus 10.3%, P < 0.01), right labial (18.4 versus 8.1%, P < 0.05) and left labial pain (15.3 versus 3.7%, P < 0.01) along with pain in the right/left hypogastric and umbilical abdominopelvic regions (P < 0.05 for all). Among women with endometriosis, no clear and consistent patterns emerged regarding pain characteristics and endometriosis staging or anatomic location. Interpretation of our findings requires caution given that we were limited in our assessment of pain characteristics by endometriosis staging and anatomic location due to the majority of women having minimal (stage I) disease (56%) and lesions in peritoneum-only location (51%). Significance tests for pain topology related to gynecologic pathology were not corrected for multiple comparisons. Results of our research suggest that while women with endometriosis appear to have higher pelvic pain, particularly dyspareunia, dysmenorrhea, dyschezia and pain in the vaginal and abdominopelvic area than women with other gynecologic disorders or a normal pelvis, pelvic pain is commonly reported among women undergoing laparoscopy, even among women with no identified gynecologic pathology. Future research should explore causes of pelvic pain among women who seek out gynecologic care but with no apparent gynecologic pathology. Given our and other's research showing little correlation between pelvic pain and rASRM staging among women with endometriosis, further development and use of a classification system that can better predict outcomes for endometriosis patients with pelvic pain for both surgical and nonsurgical treatment is needed. Supported by the Intramural Research Program, Eunice Kennedy Shriver National Institute of Child Health and Human Development (contracts NO1-DK-6-3428, NO1-DK-6-3427, and 10001406-02). The authors have no potential competing interests. © The Author 2015. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved. For Permissions, please email:
    Human Reproduction 08/2015; DOI:10.1093/humrep/dev147 · 4.57 Impact Factor
  • Source
    • "Endometriosis is a common disorder affecting an estimated 11% of the population.1,2 The true prevalence is difficult to ascertain because women have varying degrees of symptoms and surgical biopsy is required for definitive diagnosis. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Background and Objectives: Thoracic endometriosis is a rare form of extragenital endometriosis with important clinical ramifications. Up to 80% of women with thoracic endometriosis have concomitant abdominopelvic endometriosis, yet the surgical treatment is usually performed with separate procedures. This is the largest published series of the combination of video-assisted thoracoscopic surgery and traditional laparoscopy for the treatment of abdominopelvic and thoracic endometriosis. The objectives of this series are to further evaluate the manifestations of thoracic endometriosis, assess the multidisciplinary surgical approach, and discuss our institution's protocols. Methods: This is a retrospective, institutional review board–approved case series of 25 consecutive women who underwent combined video-assisted thoracoscopic surgery and traditional laparoscopy for the treatment of abdominopelvic, diaphragmatic, and thoracic endometriosis from January 1, 2008, to September 30, 2013. All surgeries were performed at a tertiary referral center by the same primary surgeons. Data were collected by chart review. Results: Twenty-five patients were included, with a mean age of 37.7 years. Eighty percent of patients had catamenial chest pain, and in 40% this was their only chest complaint. Shoulder pain was noted in 40% of patients, catamenial pneumothorax in 24%, and hemoptysis in 12%. One hundred percent of patients were found to have endometriosis in the pelvis, 100% in the diaphragm, 64% in the chest wall, and 40% in the parenchyma. There were 2 major postoperative complications: 1 diaphragmatic hernia and 1 vaginal cuff hematoma. Conclusion: Clinical suspicion and preoperative assessment are crucial in the diagnosis of thoracic endometriosis and allow for a multidisciplinary approach. The combination of video-assisted thoracoscopic surgery and traditional laparoscopy for the treatment of endometriosis optimally addresses the pelvis, diaphragm, and thoracic cavity in a single operation.
    JSLS: Journal of the Society of Laparoendoscopic Surgeons / Society of Laparoendoscopic Surgeons 07/2014; 18(3). DOI:10.4293/JSLS.2014.00312 · 0.91 Impact Factor
  • Source
    • "Twenty-six women had no diagnostic information stemming from the cancellation of 22 (4%) surgeries or 4 (4%) unreadable MRIs in the operative and population cohorts, respectively, and were excluded from all analyses. Despite their different sampling frameworks, few differences were observed between cohorts (data not shown), with the exception of a higher percentage of married women in the operative than in the population cohort (76% vs. 60%, respectively), as previously reported (Buck Louis et al. 2011). The incidence of surgically visualized endometriosis was 41% in the operative cohort, whereas MRI-visualized endometriosis was 11% in the population cohort. "
    [Show abstract] [Hide abstract]
    ABSTRACT: To evaluate the association between persistent organic pollutants (POPs) and uterine fibroids, we used previously collected data from a cohort of women aged 18-44 years undergoing laparoscopy or laparotomy at 14 participating hospital surgical centers (n=473). POP concentrations were measured in omental fat and serum. Presence of fibroids was defined on the basis of a postoperative diagnosis (n=99). Odds ratios (OR) and 95% confidence interval (CI) for each POP by biologic medium were estimated using unconditional logistic regression adjusted for identified covariates. Concentrations were higher in omental fat than in serum for all POPs. Serum p,p'-dichlorodiphenyldichloroethylene (p,p'-DDE) was the only POP associated with fibroids (per 1-SD increase in log-transformed p,p'-DDE OR (95% CI): 1.37 (1.05-1.80)). In analyses excluding women diagnosed with endometriosis, a number of polychlorinated biphenyls (PCBs) measured in omental fat were associated with fibroids (PCB 99: 1.64 (1.08, 2.49); PCB 138: 1.64 (1.03, 2.59); PCB 146: 1.54 (1.01, 2.37); PCB 153: 1.88 (1.12, 3.13); PCB 196: 1.60 (1.02, 2.51); PCB 206: 1.52 (1.01, 2.29)). Although exploratory, our study suggests that PCBs may be associated with fibroids in the absence of other gynecologic disorders such as endometriosis, but the associations varied by biologic media with more POPs emerging when quantified in fat.Journal of Exposure Science and Environmental Epidemiology advance online publication, 7 May 2014; doi:10.1038/jes.2014.31.
    Journal of Exposure Science and Environmental Epidemiology 05/2014; 25(3). DOI:10.1038/jes.2014.31 · 3.19 Impact Factor
Show more