Patients’ and physicians’ descriptions of occurrence and diagnosis of endometriosis: a qualitative study from Iran

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Abstract

Background

The prevalence of endometriosis is considerable but its diagnosis is a dilemma. The aim of this study was to explore the perception and experiences of endometriosis patients and physicians about occurrence and diagnosis of endometriosis.

Methods

A qualitative research using content analysis was used to obtain data from purposely selected endometriosis patients (12 participants) and gynecologists (6 participants) from January to September 2013 in Tehran. Data were coded and analyzed using a thematic approach.

Results

Seven themes emerged: 1) pain localization, 2) Severity of pain and struggle for pain relief, 3) Feeling inability to play the role of femininity, 4) Reducing physical health, 5) Disruption of social life, 6) Looking for a reliable diagnostic indicator, 7) Uncertainty of physical examination. The results highlighted that patients with the disease can experience different feelings that interfere with their wellbeing and their lives, and sometimes could be disabling.

Conclusion

Patients and physicians are looking for a certain, noninvasive and inexpensive diagnostic method. This study helps to promote clinical diagnostic view and knowledge development about description of endometriosis diagnosis to decrease diagnostic delay and mismanagement.

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Most cited references 26

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Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.

Kelechi E. Nnoaham, Lone Hummelshoj, Premila Webster … (2011)

To assess the impact of endometriosis on health-related quality of life (HRQoL) and work productivity. Multicenter cross-sectional study with prospective recruitment. Sixteen clinical centers in ten countries. A total of 1,418 premenopausal women, aged 18-45 years, without a previous surgical diagnosis of endometriosis, having laparoscopy to investigate symptoms or to be sterilized. None. Diagnostic delay, HRQoL, and work productivity. There was a delay of 6.7 years, principally in primary care, between onset of symptoms and a surgical diagnosis of endometriosis, which was longer in centers where women received predominantly state-funded health care (8.3 vs. 5.5 years). Delay was positively associated with the number of pelvic symptoms (chronic pelvic pain, dysmenorrhoea, dyspareunia, and heavy periods) and a higher body mass index. Physical HRQoL was significantly reduced in affected women compared with those with similar symptoms and no endometriosis. Each affected woman lost on average 10.8 hours (SD 12.2) of work weekly, mainly owing to reduced effectiveness while working. Loss of work productivity translated into significant costs per woman/week, from US$4 in Nigeria to US$456 in Italy. Endometriosis impairs HRQoL and work productivity across countries and ethnicities, yet women continue to experience diagnostic delays in primary care. A higher index of suspicion is needed to expedite specialist assessment of symptomatic women. Future research should seek to clarify pain mechanisms in relation to endometriosis severity. Copyright © 2011 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.

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What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis.

Jeremy Wright, K Ballard, Karen Lowton (2006)

To investigate the reasons women experience delays in the diagnosis of endometriosis and the impact of this. A qualitative interview-based study of 32 women, 28 of whom were subsequently diagnosed with endometriosis. Southeast England. Women attending a pelvic pain clinic. Semistructured interviews. Women's reported experiences of being diagnosed with endometriosis. Delays in the diagnosis of endometriosis occur at an individual patient level and a medical level, as both women and family doctors normalize symptoms, symptoms are suppressed through hormones, and nondiscriminatory investigations are relied upon. Women benefited from a diagnosis, because it provided a language in which to discuss their condition, offered possible management strategies to control symptoms, and provided reassurance that symptoms were not due to cancer. Diagnosis also sanctioned women's access to social support and legitimized absences from social and work obligations. Although recent guidelines for the management of chronic pelvic pain suggest that diagnostic laparoscopy may be considered a secondary investigation after the failure of therapeutic interventions, the present study highlights the importance of an early diagnosis for women who suffer at physical, emotional, and social levels when they remain undiagnosed.

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Priorities for Endometriosis Research

Peter Rogers, Thomas M. D’Hooghe, Asgerally Fazleabas … (2009)

Endometriosis is an estrogen-dependent disorder where endometrial tissue forms lesions outside the uterus. Endometriosis affects an estimated 10% of women in the reproductive-age group, rising to 30% to 50% in patients with infertility and/or pain, with significant impact on their physical, mental, and social well-being. There is no known cure, and most current medical treatments are not suitable long term due to their side-effect profiles. Endometriosis has an estimated annual cost in the United States of $18.8 to $22 billion (2002 figures). Although endometriosis was first described more than 100 years ago, current knowledge of its pathogenesis, spontaneous evolution, and the pathophysiology of the related infertility and pelvic pain, remain unclear. A consensus workshop was convened following the 10th World Congress on Endometriosis to establish recommendations for priorities in endometriosis research. One major issue identified as impacting on the capacity to undertake endometriosis research is the need for multidisciplinary expertise. A total of 25 recommendations for research have been developed, grouped under 5 subheadings: (1) diagnosis, (2) classification and prognosis, (3) treatment and outcome, (4) epidemiology, and (5) pathophysiology. Endometriosis research is underfunded relative to other diseases with high health care burdens. This may be due to the practical difficulties of developing competitive research proposals on a complex and poorly understood disease, which affects only women. By producing this consensus international research priorities statement it is the hope of the workshop participants that researchers will be encouraged to develop new interdisciplinary research proposals that will attract increased funding support for work on endometriosis.

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Author and article information

Contributors

Hedyeh Riazi

Najmeh Tehranian

Saeideh Ziaei

Easa Mohammadi

Ebrahim Hajizadeh

Ali Montazeri

Journal

Journal ID (nlm-ta): BMC Womens Health

Journal ID (iso-abbrev): BMC Womens Health

Title: BMC Women's Health

Publisher: BioMed Central

ISSN (Electronic): 1472-6874

Publication date Collection: 2014

Publication date (Electronic): 30 August 2014

Volume: 14

Page: 103

Affiliations

[1 ]Department of Reproductive Health and Midwifery, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran

[2 ]Department of Nursing, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran

[3 ]Department of Biostatistics, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran

[4 ]Mental Health research Group, Health Metrics Research Center, Iranian Institute for Health Sciences Research, ACECR, Tehran, Iran

Article

Publisher ID: 1472-6874-14-103

DOI: 10.1186/1472-6874-14-103

PMC ID: 4158003

PubMed ID: 25174639

SO-VID: 152c6db5-ace8-4cab-ae48-70b564814794

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Patients’ and physicians’ descriptions of occurrence and diagnosis of endometriosis: a qualitative study from Iran

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Most cited references 26

Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.

What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis.

Priorities for Endometriosis Research

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