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Am J Obstet Gynecol. 2019 Feb 18. pii: S0002-9378(19)30385-0. doi: 10.1016/j.ajog.2019.02.033. [Epub ahead of print]

Assessing Research Gaps and Unmet Needs in Endometriosis.

Author information

1
Department of Obstetrics & Gynecology, University of Michigan, Ann Arbor, MI, USA.
2
Patient advocate.
3
Department of Obstetrics, Gynecology & Reproductive Sciences, University of California, San Francisco, San Francisco, CA, USA.
4
White Dress Project, Atlanta, GA.
5
Department of Global & Community Health, George Mason University, Fairfax, VA, USA.
6
Society for Women's Health Research, Washington, DC, USA.
7
Division of Gynecology, Boston Children's Hospital; Department of Obstetrics, Gynecology & Reproductive Biology, Brigham and Women's Hospital; Harvard Medical School, Boston, MA, USA.
8
4Directions Counseling LLC, Bethlehem, PA, USA.
9
Depart of Obstetrics, Gynecology and Reproductive Biology, Michigan State University, East Lansing, MI, USA; Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA.
10
Department of Obstetrics & Gynecology, University of Utah, Salt Lake City, UT, USA.
11
Department of Obstetrics & Gynecology, University of Mississippi Medical Center, Jackson, MS, USA.
12
Department of Obstetrics & Gynecology, Columbia University Medical Center, New York, NY, USA.
13
Department of Obstetrics & Gynecology, University of British Columbia, Vancouver, BC, CA.
14
Society for Women's Health Research, Washington, DC, USA. Electronic address: science@swhr.org.

Abstract

Endometriosis, a systemic disease that is often painful and chronic, affects ∼10% of reproductive-age women. The disease can negatively impact a patient's physical and emotional well-being, quality of life, and productivity. Endometriosis also places significant economic and social burden on patients, their families, and society as a whole. Despite its high prevalence and cost, endometriosis remains underfunded and under-researched - greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options. Due in part to the societal normalization of women's pain and stigma around menstrual issues, there is also a lack of disease awareness among patients, health care providers, and the public. The Society for Women's Health Research convened an interdisciplinary group of expert researchers, clinicians, and patients for a roundtable meeting to review the current state of the science on endometriosis and identify areas of need to improve a woman's diagnosis, treatment, and access to quality care. Comprehensive and interdisciplinary approaches to disease management and increased education and disease awareness for patients, health care providers, and the public are needed to remove stigma, increase timely and accurate diagnosis and treatment, and allow for new advancements.

KEYWORDS:

chronic pain; endometriosis; infertility; pelvic pain; stigma; women’s health

PMID:
30790565
DOI:
10.1016/j.ajog.2019.02.033

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