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Background: Endometriosis as a chronic gynecological disease has several negative effects on women's life, thereby placing a huge burden on the patients and the health system. The negative impact of living with endometriosis (impaired quality of life, diverse medical experiences) is detailed in the literature, however, we know less about patients' self-management, social support, the meaning of life with a chronic disease, and the needs of patients. To implement a proper multidisciplinary approach in practice, we need to have a comprehensive view of the complexity of endometriosis patients' life and disease history., Methods: Four focus group discussions were conducted between October 2014 and November 2015 by a team consisting of medical and psychological specialists. 21 women (age: 31.57; SD = 4.45) with surgical and histological confirmation of endometriosis were included in the study. Discussions were audiotaped and transcribed verbatim, and a 62,051-word corpus was analyzed using content analysis., Results: Four main themes emerged from the analysis: (1) the impact of endometriosis on quality of life, (2) medical experiences, (3) complementary and alternative treatments, and (4) different coping strategies in disease management. All themes were interrelated and highly affected by a lack of information and uncertainty caused by endometriosis. A supporting doctor-patient relationship, active coping, and social support were identified as advantages over difficulties. Finding the positive meaning of life after accepting endometriosis increased the possibility of posttraumatic growth. Furthermore, women's needs were identified at all levels of the ecological approach to health promotion., Conclusions: Our results highlight the need for multidisciplinary healthcare programs and interventions to find solutions to the difficulties of women with endometriosis. To achieve this goal, a collaboration of professionals, psychologists, and support organizations is needed in the near future., (© 2022. The Author(s).)

Study Question: To what extent are pain symptoms, psychological variables (anxiety, depression and distress) and emotion regulation associated with women's health in endometriosis?, Summary Answer: Physical pain symptoms and emotion regulation difficulties via psychological stress negatively affect the health-related quality of life (HRQoL) of women living with endometriosis., What Is Known Already: There are some missing links in the definitive treatment and recovery from endometriosis. Women with chronic pain report a decrease in HRQoL and an increase in the frequency of psychological problems, but little is known about the complex relationship between these variables in the context of endometriosis., Study Design, Size, Duration: This cross-sectional study was conducted between October 2014 and October 2015 on 193 women living with endometriosis., Participants/materials, Setting, Methods: The sample consisted of women with a medically confirmed diagnosis of endometriosis who received treatment at the participating clinic. All participants completed the Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale, the Perceived Stress Scale and the Difficulties in Emotion Regulation Scale. Spearman's rank correlation was used to explore the associations between the measured variables, and structural equation modeling was used to test the proposed mediation models., Main Results and the Role of Chance: The response rate was 46%. In this study, 54.79% of the participants presented with anxiety and 20.3% with depressive symptoms. Pain symptoms, psychological variables and difficulties in emotion regulation were negatively associated with HRQoL. Mediation models revealed that physical pain, psychological stress and difficulties in emotion regulation explained 55% of the variance in the overall HRQoL, 41% of the variation in physical and 55% of the variation in mental HRQoL. Accordingly, severe physical pain (β = -0.39, P < 0.001) was directly, and difficulties in emotion regulation (β = -0.38, P < 0.001) was indirectly related to deterioration in overall HRQoL. Physical pain had a higher direct standardized effect (β = -0.51, P < 0.001) on physical HRQoL, and had no significant direct effect on mental HRQoL. Furthermore, both physical pain (β = -0.07, P < 0.001) and difficulties in emotion regulation (β = -0.46, P < 0.001) had a significant indirect effect on mental HRQoL., Limitations, Reasons for Caution: The data were heterogeneous with regard to the severity of endometriosis. The validity of this cross-sectional study is limited to correlations; therefore, further longitudinal studies using a more representative sample are needed to explore valid causal relationships., Wider Implications of the Findings: The results of this study indicate that HRQoL can be improved through pain management and emotion regulation strategies. The authors believe that HRQoL would increase with concomitant application of physical treatment and psychological care., Study Funding/competing Interest(s): There were no external funding sources for this study, and the authors have no conflicts of interest to declare., Trial Registration Number: Not applicable., (© The Author 2017. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com)