Abstract
BackgroundEndometriosis 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.MethodsFour 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.ResultsFour 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.ConclusionsOur 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.
Highlights
Endometriosis is a chronic inflammatory disease that is defined as the presence of endometrium-like tissues outside the uterus causing pain symptoms and infertility [1]
Published qualitative data demonstrated the negative impact of endometriosis on health-related quality of life (HRQoL) and medical experiences but offered fewer findings of self-management, social support, femininity, the meaning of life with a chronic disease, and future directions and needs of patients
Peritoneal endometriosis was observed (21/21, 100%), ovarian endometriosis was found in 11 patients (11/21, 52.3%) while deep infiltrating endometriosis affecting the rectum and/ or the rectovaginal space was present in 6 cases (6/21, 28.6%)
Summary
Endometriosis is a chronic inflammatory disease that is defined as the presence of endometrium-like tissues outside the uterus causing pain symptoms (dysmenorrhea, dyspareunia, chronic pelvic pain) and infertility [1] This gynecological disease affects approximately 2–10% of Endometriosis has a negative impact on health-related quality of life (HRQoL) [4]. Published qualitative data demonstrated the negative impact of endometriosis on HRQoL and medical experiences but offered fewer findings of self-management, social support, femininity, the meaning of life with a chronic disease, and future directions and needs of patients. The negative impact of living with endometriosis (impaired quality of life, diverse medical experiences) is detailed in the literature, 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
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