Endometriose : um estudo sociológico sobre a negligência social e biomédica com sofrimento de mulheres

Abstract

This study approaches, from a sociological approach, the experience of women who live with endometriosis, having as reference the narratives shared in cyberspace about their experiences with endometriosis. According to Biomedicine, endometriosis is an inflammation that affects the uterus and can extend to other organs. Women living with endometriosis experience disabling pain, become discouraged from experiencing social life, may have difficulties in bearing children, in addition to facing disbelief about their physical suffering and about the veracity and intensity of pain, even during medical care. As biomedical therapeutic resources to live with the disease, since it is said that there is no cure, there are drug treatments with contraceptives that address menstruation as the main cause of the disease. However, the continuous use of contraceptives leads to increased suffering, the existence of depression and other disorders. Some women have serious cases, such as “deep endometriosis”, which requires surgical intervention, being only a palliative treatment. Sociologically considered a long-term disease, endometriosis affects women's personal, family and professional lives. This dissertation therefore focused on an investigation around the experiences of illness of women with endometriosis, analyzing narratives (from the first suspicions to the diagnosis to the ways these women know about the disease, such as the appropriation of medical knowledge and other therapeutic processes) . The locus of the study were two private Facebook pages: “Endometriose profunda”, created in 2018 and “Endometriose sem”, created in 2017. These virtual pages are privileged spaces where experiences of pain, anguish, challenges and achievements are shared. Greater attention was sought for these exchanges of information and knowledge about therapeutic itineraries, as well as the agency of these women in living with the disease and with their own bodies. From the results, it was observed that women living with endometriosis call themselves “endometriacs” or “endowomen”. Faced with uncertainties, people living with endometriosis seek alternatives to achieve some quality of life, which may lead to remission of the disease for those who assume other self-care strategies as an intervention alternative.