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Licensed Unlicensed Requires Authentication Published by De Gruyter February 3, 2020

Patient perceptions of misdiagnosis of endometriosis: results from an online national survey

  • Allyson C. Bontempo EMAIL logo and Lisa Mikesell
From the journal Diagnosis



Endometriosis is an estrogen-dependent disease affecting 10% of females in which endometrial-like tissue grows outside the uterus, resulting in pain, infertility, and physical and psychosocial dysfunction. Prior research documenting diagnostic error reports a 6.7-year mean diagnostic delay. This study takes a patient-oriented approach and aims to complement prior research on diagnostic error by examining patient-reported experiences with misdiagnosis.


Data were part of a larger online survey comprising nonrandomly sampled patients with self-reported surgically confirmed endometriosis (n = 758). We examined patients’ reports of misdiagnosis, to which healthcare professionals (HCPs) they attributed misdiagnosis, mean diagnostic delay, and endometriosis symptoms and physical sites predicting misdiagnosis reports.


Mean reported diagnostic delay was 8.6 years. 75.2% of patients reported being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%) and most frequently by gynecologists (53.2%) followed by general practitioners (34.4%). Higher odds of reporting a physical or mental health misdiagnosis was associated with reports of virtually all symptoms and endometriosis on the bladder, small bowel, pelvic sidewall, and rectum. Higher odds of reporting a physical health misdiagnosis was exclusively associated with reports of endometriosis on the appendix. Higher odds of reporting a mental health misdiagnosis was exclusively associated with reports of a younger symptom onset age; endometriosis on the diaphragm, large bowel, lung, and ureter; and comorbid adenomyosis diagnosis.


Endometriosis continues to present serious and complex diagnostic challenges. These findings corroborate previous objective investigations documenting endometriosis diagnostic error, establish the first patient-reported incidence, and further demonstrate value in including patients in diagnostic error research.

Corresponding author: Allyson C. Bontempo, MA, Doctoral Student, School of Communication and Information, Rutgers University, 4 Huntington Street, New Brunswick, NJ 08901, USA


We thank Heather C. Guidone, BCPA, Surgical Program Director, Center for Endometriosis Care, Atlanta, GA, and Jeffrey T. Arrington, MD, FACOG, ACGE, Endometriosis Surgeon/Center for Endometriosis Care, Atlanta, GA for the medical review and providing important suggestions for improvement of the early stages of this manuscript. We thank Katherine (Katya) Ognyanova, PhD, Rutgers University, for her supervision in the study design and implementation of this research. We also thank the Endometriosis Foundation of America, the Endometriosis Research Center, Endometriosis Network Canada, and Endometriosis Association Ireland for their recruitment efforts and advertisement of the larger research study. Last, we thank all the endometriosis patients for their time and participation in this research.

  1. Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.

  2. Research funding: None declared.

  3. Employment or leadership: None declared.

  4. Honorarium: None declared.

  5. Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.


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Received: 2019-03-08
Accepted: 2020-01-09
Published Online: 2020-02-03
Published in Print: 2020-05-26

©2020 Walter de Gruyter GmbH, Berlin/Boston

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