{"paper_id":"f94519ef-a41e-4676-8958-3fb348e07727","body_text":"‘Listen to women as if they were your most cherished person’: Australian women’s perspectives on living with the pain of endometriosis: A mixed-methods study\nAbstract\nIntroduction\nMethod\nParticipants\nMeasures\nQuantitative measures\nQualitative measures\nStudy design\nAnalysis\nQualitative data analysis\nQuantitative data analysis\nResults\n| Ethnicity n (%) | |\n| Australian English | 255 (66) |\n| Aboriginal/Torres Strait Islander | 14 (4%) |\n| European | 89 (23%) |\n| Other (Asian, African, Middle Eastern) | 25 (7%) |\n| Level of education n (%) | |\n| Year 12 or less | 88 (23%) |\n| Vocational education (TAFE) | 86 (22%) |\n| University degree (Bachelor/Master/PhD) | 180 (47%) |\n| other | 29 (8%) |\n| Marital status n (%) | |\n| Single | 145 (37%) |\n| Married/de Facto | 217 (57%) |\n| Separated/Divorced | 15 (4%) |\n| Other | 6 (2%) |\n| Employment status n (%) | |\n| Employed full time | 184 (48%) |\n| Employed part time | 90 (24%) |\n| Unemployed, unable to work, homemaker | 33 (9%) |\n| Student | 43 (11%) |\n| Self-employed or other | 33 (8%) |\n| Children: 1 or more n (%) | 284 (74%) |\n| Moderate to extreme fatigue on least fatigued day | 111 (29%) |\n| Moderate to extreme fatigue on most fatigued day | 340 (89%) |\n| Depression symptoms | |\n| Mild – moderate | 124 (32%) |\n| Severe – extremely severe | 96 (25%) |\n| Anxiety symptoms | |\n| Mild – moderate | 107 (28%) |\n| Severe – extremely severe | 121 (32%) |\n| Stress symptoms | |\n| Mild – moderate | 221 (58%) |\n| Severe – extremely severe | 81 (21%) |\n| Pain severity | |\n| Mild | 14 (3.7%) |\n| Moderate | 124 (32.4%) |\n| Severe | 245 (64%) |\n| Usual endometriosis pain scores | |\n| Mild (1–3) | 10 (2.6%) |\n| Moderate (4–7) | 75 (19.6%) |\n| Severe (8–10) | 236 (61.7%) |\nThemes of living with endometriosis pain\nDebilitating impact\nYou have to be cautious taking time off work or school because you dont know how bad it is going to get. There is always a worse day so if your pain is at a level you can function, you really need to try and push through so that you can take time off when you have days that are unbearable (aged 25, severe pain).\nStigma and change\nListen to women as if they were your most cherished person. The level of debilitation related to pain cannot be quantified. We are all suffering in our own ways, and it’s so disheartening when you or others compare ‘how bad it is’ related to someone else. Believe women when they say they have pain!… to have your integrity questioned every time you raise the issue just makes you hide it more (aged 31, mild pain).\nInadequate healthcare\nIt is deeply depressing to be dismissed and sent home by specialists who either dismiss your pain or refuse to offer surgical cure, or be pushed to try hormonal contraceptives that worsen the problem. Rather than admitting there is no solutions, some doctors try to ‘victim blame’ … (aged 41, severe pain).\nSelf-empowerment\nMixed-method analysis\n| Model 1 | Model 2 | |||||||||\n|---|---|---|---|---|---|---|---|---|---|---|\n| B | SE | OR | OR 95% CI | B | SE | OR | OR 95% CI | |||\n| LL | UL | LL | UL | |||||||\n| Debilitating impact | ||||||||||\n| Age | 0.012 | 0.016 | 1.012 | 0.981 | 1.044 | 0.010 | 0.017 | 1.01 | 0.976 | 1.044 |\n| Employment | 0.440 | 0.260 | 1.553 | 0.933 | 2.585 | 0.557 | 0.280 | 1.746* | 1.009 | 3.021 |\n| Education | 0.312 | 0.211 | 1.366 | 0.903 | 2.067 | 0.391 | 0.225 | 1.479 | 0.952 | 2.298 |\n| PSS Family | 0.064 | 0.094 | 1.066 | 0.887 | 1.281 | |||||\n| PSS Friends | 0.001 | 0.095 | 1.001 | 0.830 | 1.206 | |||||\n| PSS SO | 0.028 | 0.088 | 1.028 | 0.865 | 1.223 | |||||\n| Depression | −0.038 | 0.033 | 0.962 | 0.902 | 1.027 | |||||\n| Anxiety | −0.052 | 0.038 | 0.950 | 0.882 | 1.023 | |||||\n| Stress | 0.024 | 0.036 | 1.024 | 0.954 | 1.1 | |||||\n| WQ Physical | −0.121 | 0.037 | 0.886** | 0.824 | 0.953 | |||||\n| WQ Psychological | 0.090 | 0.050 | 1.095 | 0.993 | 1.207 | |||||\n| WQ Social | −0.055 | 0.056 | 0.947 | 0.848 | 1.057 | |||||\n| WQ Environmental | 0.012 | 0.031 | 1.012 | 0.953 | 1.076 | |||||\n| Fatigue | −0.004 | 0.010 | 0.996 | 0.976 | 1.016 | |||||\n| Stigma and change | ||||||||||\n| Age | −0.026 | 0.016 | 0.974 | 0.944 | 1.006 | −0.025 | 0.017 | 0.975 | 0.943 | 1.009 |\n| Employment | −0.720 | 0.276 | 0.487 | 0.283 | 0.836 | −0.864 | 0.298 | 0.421** | 0.235 | 0.756 |\n| Education | 0.059 | 0.216 | 1.061 | 0.695 | 1.620 | 0.003 | 0.227 | 1.003 | 0.642 | 1.566 |\n| PSS family | 0.240 | 0.094 | 1.271* | 1.057 | 1.529 | |||||\n| PSS friends | 0.018 | 0.096 | 1.018 | 0.843 | 1.228 | |||||\n| PSS SO | −0.051 | 0.091 | 0.950 | 0.795 | 1.136 | |||||\n| Depression | −0.073 | 0.033 | 0.929* | 0.870 | 0.992 | |||||\n| Anxiety | 0.022 | 0.038 | 1.022 | 0.948 | 1.102 | |||||\n| Stress | −0.010 | 0.037 | 0.990 | 0.921 | 1.065 | |||||\n| WQ physical | −0.007 | 0.037 | 0.993 | 0.923 | 1.067 | |||||\n| WQ psychological | −0.071 | 0.051 | 0.932 | 0.843 | 1.029 | |||||\n| WQ social | −0.059 | 0.057 | 0.942 | 0.842 | 1.055 | |||||\n| WQ environmental | 0.009 | 0.031 | 1.009 | 0.949 | 1.073 | |||||\n| Fatigue | 0.004 | 0.010 | 1.004 | 0.984 | 1.025 | |||||\n| Inadequate healthcare | ||||||||||\n| Age | 0.043 | 0.019 | 1.044* | 1.007 | 1.082 | 0.034 | 0.020 | 1.035 | 0.996 | 1.076 |\n| Employment | −0.360 | 0.292 | 0.698 | 0.393 | 1.237 | −0.356 | 0.320 | 0.700 | 0.374 | 1.311 |\n| Education | 0.024 | 0.250 | 1.024 | 0.627 | 1.672 | 0.152 | 0.266 | 1.164 | 0.691 | 1.961 |\n| PSS family | −0.279 | 0.097 | 0.757** | 0.625 | 0.915 | |||||\n| PSS friends | 0.069 | 0.110 | 1.071 | 0.863 | 1.33 | |||||\n| Depression | −0.045 | 0.038 | 0.956 | 0.887 | 1.031 | |||||\n| Anxiety | −0.031 | 0.045 | 0.969 | 0.888 | 1.058 | |||||\n| Stress | 0.024 | 0.042 | 1.024 | 0.943 | 1.112 | |||||\n| WQ physical | 0.014 | 0.042 | 1.014 | 0.933 | 1.101 | |||||\n| WQ psychological | 0.052 | 0.058 | 1.054 | 0.941 | 1.18 | |||||\n| WQ social | 0.066 | 0.065 | 1.069 | 0.941 | 1.213 | |||||\n| WQ environmental | −0.061 | 0.036 | 0.941 | 0.877 | 1.01 | |||||\n| Fatigue | 0.017 | 0.012 | 1.017 | 0.993 | 1.041 | |||||\n| Self-empowerment | ||||||||||\n| Age | 0.011 | 0.017 | 1.011 | 0.978 | 1.045 | 0.009 | 0.018 | 1.009 | 0.974 | 1.046 |\n| Employment | 0.183 | 0.276 | 1.201 | 0.699 | 2.062 | 0.092 | 0.298 | 1.096 | 0.611 | 1.967 |\n| Education | −0.336 | 0.227 | 0.715 | 0.458 | 1.116 | −0.351 | 0.245 | 0.704 | 0.436 | 1.139 |\n| PSS family | −0.235 | 0.098 | 0.790* | 0.652 | 0.958 | |||||\n| PSS friends | −0.133 | 0.103 | 0.876 | 0.715 | 1.072 | |||||\n| PSS SO | 0.008 | 0.095 | 1.008 | 0.837 | 1.214 | |||||\n| Depression | 0.045 | 0.036 | 1.046 | 0.975 | 1.123 | |||||\n| Anxiety | −0.024 | 0.042 | 0.976 | 0.900 | 1.059 | |||||\n| Stress | −0.037 | 0.040 | 0.964 | 0.892 | 1.042 | |||||\n| WQ physical | 0.064 | 0.039 | 1.066 | 0.988 | 1.15 | |||||\n| WQ psychological | 0.008 | 0.055 | 1.008 | 0.906 | 1.122 | |||||\n| WQ social | 0.252 | 0.065 | 1.287** | 1.134 | 1.461 | |||||\n| WQ environmental | 0.008 | 0.033 | 1.008 | 0.945 | 1.076 | |||||\n| Fatigue | 0.014 | 0.011 | 1.014 | 0.993 | 1.036 |\nDiscussion\nFuture research\nLimitations\nConclusion\nAcknowledgments\nEthics approval\nInformed consent\nDeclaration of conflicting interests\nFunding\nORCID iDs\nData availability statement\nReferences\nSupplementary Material\nPlease find the following supplemental material available below.\nFor Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.\nFor non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright 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Healthcare Experiences of Regional Australian Women: A Qualitative Systematic Review\n- Six to seven times less likely to be physically active: Low self-determination and basic psychological needs support in women with endometriosis—A cluster analysis\n- Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine\n- “Effortful” motherhood: A mixed-methods study of the impact of endometriosis on family life\nFigures and tables\nFigures & Media\nTables\nView Options\nView options\nPDF/EPUB\nView PDF/EPUBAccess options\nIf you have access to journal content via a personal subscription, university, library, employer or society, select from the options below:\nloading institutional access options\nAlternatively, view purchase options below:\nPurchase 24 hour online access to view and download content.\nAccess journal content via a DeepDyve subscription or find out more about this 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