The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey
Open accessAbstract
STUDY QUESTION: To what extent do the management of endometriosis and the symptoms that remain after treatment affect the quality of life in women with the disease? SUMMARY ANSWER: Many women with endometriosis had impaired quality of life and continued to suffer from endometriosis-associated symptoms even though their endometriosis has been managed in tertiary care centres. WHAT IS KNOWN ALREADY: The existing literature indicates that quality of life and work productivity is reduced in women with endometriosis. However, most studies have small sample sizes, are treatment related or examine newly diagnosed patients only. STUDY DESIGN, SIZE, DURATION: A cross-sectional questionnaire-based survey among 931 women with endometriosis treated in 12 tertiary care centres in 10 countries. PARTICIPANTS/MATERIALS, SETTING, METHODS: Women diagnosed with endometriosis who had at least one contact related to endometriosis-associated symptoms during 2008 with a participating centre were enrolled into the study. The study investigated the effect of endometriosis on education, work and social wellbeing, endometriosis-associated symptoms and health-related quality of life, by using questions obtained from the World Endometriosis Research Foundation (WERF) GSWH instrument (designed and validated for the WERF Global Study on Women's Health) and the Short Form 36 version 2 (SF-36v2). MAIN RESULTS AND THE ROLE OF CHANCE: Of 3216 women invited to participate in the study, 1450 (45%) provided informed consent and out of these, 931 (931/3216 = 29%) returned the questionnaires. Endometriosis had affected work in 51% of the women and affected relationships in 50% of the women at some time during their life. Dysmenorrhoea was reported by 59%, dyspareunia by 56% and chronic pelvic pain by 60% of women. Quality of life was decreased in all eight dimensions of the SF-36v2 compared with norm-based scores from a general US population (all P < 0.01). Multivariate regression analysis showed that number of co-morbidities, chronic pain and dyspareunia had an independent negative effect on both the physical and mental component of the SF-36v2. LIMITATIONS, REASONS FOR CAUTION: The fact that women were enrolled in tertiary care centres could lead to a possible over-representation of women with moderate-to-severe endometriosis, because the participating centres typically treat more complex and referred cases of endometriosis. The response rate was relatively low. Since there was no Institute Review Board approval to do a non-responder investigation on basic characteristics, some uncertainty remains regarding the representativeness of the investigated population. WIDER IMPLICATIONS OF THE FINDINGS: This international multicentre survey represents a large group of women with endometriosis, in all phases of the disease, which increases the generalizability of the data. Women still suffer from frequent symptoms, despite tertiary care management, in particular chronic pain and dyspareunia. As a result their quality of life is significantly decreased. A patient-centred approach with extensive collaboration across disciplines, such as pain specialists, psychologists, sexologists and social workers, may be a valuable strategy to improve the long-term care of women with endometriosis. STUDY FUNDING/COMPETING INTEREST(S): The WERF EndoCost study is funded by the World Endometriosis Research Foundation (WERF) through grants received from Bayer Schering Pharma AG, Takeda Italia Farmaceutici SpA, Pfizer Ltd and the European Society of Human Reproduction and Embryology. The sponsors did not have a role in the design and conduct of the study; collection, management, analysis and interpretation of the data; and preparation, review or approval of the manuscript. L.H. is the chief executive and T.D. was a board member of WERF at the time of funding. T.D. holds the Merck-Serono Chair in Reproductive Medicine and Surgery, and the Ferring Chair in Reproductive Medicine at the Katholieke Universiteit Leuven in Belgium and has served as consultant/research collaborator for Merck-Serono, Schering-Plough, Astellas and Arresto.
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Ten percent of the participants in one international online survey indicated that the illness was one of the reasons for divorce.
“Ten percent of the participants in one international online survey indicated that the illness was one of the reasons for divorce [32].”
From Endometriosis: patient–doctor communication and psychological counselling (2023) · cites this paper as [32]
The Results report that 10% of the 931 women surveyed considered endometriosis a cause of their divorce. The study was international, but the Sample size section says questionnaires were mailed to participants, so describing it as an online survey is not supported. (LLM, conf=0.92)
Experimental — accuracy not yet measuredThe international online survey established that endometriosis impaired half of the participants in their working capacity, while about a quarter indicated that they had reduced their working hours accordingly.
“The international online survey referred to earlier established that endometriosis impaired half of the participants in their working capacity, while just about a quarter indicated that they had reduced their working hours accordingly [32].”
From Endometriosis: patient–doctor communication and psychological counselling (2023) · cites this paper as [32]
The Results report that endometriosis affected the jobs of 51% of respondents; 48% of those women reduced their working hours, equivalent to about a quarter of all respondents. The Results also say questionnaires were posted to participants, so describing this as an online survey is not supported. (LLM, conf=0.88)
Experimental — accuracy not yet measuredThis period is made up of an initially defensive attitude on the part of the patients lasting 2.1 years on average ('patients' delay') and a reluctance to commit themselves on the part of gynaecologists lasting 3.4 years on average ('doctors' delay').
“This period is made up of an initially defensive attitude on the part of the patients lasting 2.1 years on average (“patients’ delay”) and a reluctance to commit themselves on the part of gynaecologists lasting 3.4 years on average (“doctors’ delay”).”
From Endometriosis: patient–doctor communication and psychological counselling (2023) · cites this paper as [32]
Split into 2 atoms — 0 confirmed, 2 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measuredThe international online survey concluded that the average period between symptom perception by the patient and correct diagnosis was 5.5 years.
“The international online survey referred to earlier concluded that the average period between symptom perception by the patient and correct diagnosis was 5.5 years [32].”
From Endometriosis: patient–doctor communication and psychological counselling (2023) · cites this paper as [32]
The Results report a mean delay of 5.5 years from symptom onset to endometriosis diagnosis, comprising 2.1 years before the first doctor visit and 3.4 years thereafter. However, the Sample size section says questionnaires were mailed to participants, so the study was not an online survey. (LLM, conf=0.90)
Experimental — accuracy not yet measuredMany-though not all-studies find that endometriosis has a negative effect on partner relations.
“One outcome that many—though not all—studies come up with is that endometriosis has a negative effect on partner relations.”
From Endometriosis: patient–doctor communication and psychological counselling (2023) · cites this paper as [32]
The section on education, work and social wellbeing reports that endometriosis had a profound impact on relationships for about half of participants and cites an earlier study reporting relationship problems. It does not establish that many studies find this effect, or that some studies do not. Page numbers are unavailable in our copy. (LLM, conf=0.85)
Experimental — accuracy not yet measured
Endometriosis has a significant negative impact on social life, family, and sexual, educational and professional life.
“Endometriosis has a significant negative impact on aspects of social life, family, and sexual, educational and professional life [27,28,29].”
From Endometriosis: Epidemiology, Classification, Pathogenesis, Treatment and Genetics (Review of Literature) (2021) · cites this paper as [29]
Endometriosis is associated with severe psychological distress and a significant negative impact on health-related quality of life.
“the disease is also associated with severe psychological distress (Culley et al., 2013; De Graaff et al., 2013; Chen et al., 2016) and a significant negative impact on health-related quality of life (HRQoL) (Marinho et al., 2018).”
From Health-related quality of life in women with endometriosis: psychometric validation of the Endometriosis Health Profile 30 questionnaire using confirmatory factor analysis (2022) · cites this paper as De Graaff et al., 2013
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- Authors
- De Graaff, A. A., D'Hooghe, T. M., Dunselman, G. A. J., Dirksen, C. D., Hummelshoj, L., WERF EndoCost Consortium, Simoens, S., Bokor, A., Brandes, I., Brodszky, V., Canis, M., Colombo, G. L., DeLeire, T., Falcone, T., Graham, B., Halis, G., Horne, A. W., Kanj, O., Kjer, J. J., Kristensen, J., Lebovic, D. I., Müller, M., Vigano, P., & Wullschleger, M.
- Affiliations
- Department of Obstetrics & Gynaecology, Research Institute GROW, Maastricht University Medical Centre, Postbus 5800, 6202 AZ Maastricht, The Netherlands,
- Department of Obstetrics and Gynecology, Leuven University Fertility Center, University Hospitals Leuven, UZ Gasthuisberg, 3000 Leuven, Belgium,
- Maastricht University Medical Centre (NL)
- World Endometriosis Research Foundation (WERF), London, UK
- KU Leuven (BE)
- Universitair Ziekenhuis Leuven (BE)
- World Endometriosis Research Foundation (GB)
- ORCID
- Venue
- Human Reproduction
- Publisher
- Oxford University Press (OUP)
- Published
- 2013-07-11
- Volume
- 28
- Issue
- 10
- Pages
- 2677-2685
- ISSN
- 0268-1161 (ISSN-L)
- 1460-2350
- OpenAlex
- W2102493903
- Cited by
- 473
- References
- 30
- Citations by year
- 2026: 34 · 2025: 39 · 2024: 54 · 2023: 54 · 2022: 42 · 2021: 46 · 2020: 49 · 2019: 31 · 2018: 36 · 2017: 37 · 2016: 21 · 2015: 17 · 2014: 9 · 2013: 3
- FWCI
- 20.09
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Human Reproduction (publishedVersion)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (submittedVersion, other-oa)
- BORIS (University Library Bern) (submittedVersion, other-oa)
- HighWire Press Open Archive (submittedVersion)
- Open Access CRIS of the University of Bern
- Funders
- Pfizer
- KU Leuven
- Astellas Pharma
- European Society of Human Reproduction and Embryology
- Topics
- Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Menstrual Health and Disorders
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ectopic Pregnancy Diagnosis and Management
- Keywords
- endometriosis, quality of life, health-related quality of life, physical well-being, psychological well-being, social well-being, labor productivity, chronic pelvic pain, dyspareunia, dysmenorrhea, comorbidities, SF-36v2, women's health
- MeSH terms
- Adolescent, Adult, Aged, Cross-Sectional Studies, Endometriosis, Female, Humans, Middle Aged, Quality of Life, Multivariate Analysis
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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