ABSTRACT:Biomedical and philosophical traditions postulate the experience of pain either as quantifiable or as sociocultural phenomena. This critical assessment offers a close reading of Lara Parker’s Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (2020) and Abby Norman’s Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain (2018), analyzing the authors’ use of language as a tool to comprehend and communicate pain. Norman’s and Parker’s memoirs narrate the lived experience of endometriosis, a (...) condition diagnosed almost exclusively in women and characterized by chronic pain. The essay looks at how metaphors are employed in living and narrating endometriosis in medical, social, and cultural settings that are highly skeptical of women’s pain and trace a shift in the use of pain metaphors towards an acceptance of the pain experience, which is conceptualized as empowering by the climax of the narrative. (shrink)

Anhedonia is the diminished motivation and sensitivity to pleasurable stimuli. It has been reported to be more prevalent in patients with chronic pain as compared to healthy controls. Endometriosis is a chronic inflammatory systemic disease with a significant psychosocial impact that compromises wellbeing and the day-to-day life of patients. Women with endometriosis show significant psychological distress, even more pervasive when chronic pelvic pain is present. In the current review we will discuss the role of anhedonia in endometriotic chronic (...) pelvic pain. We will also present new lines of research that could lead to more fully clarifying the psychological impact of endometriosis and its detrimental repercussions to quality of life and mental health. (shrink)

ABSTRACT BACKGROUND: The objective of this study was to identify factors motivating women to take part in endometriosis research and to determine if these factors differ for women participating in clinical versus basic science studies. METHODS: A consecutive series of 24 women volunteering for participation in endometriosis‐related research were asked to indicate, in their own words, why they chose to volunteer. In addition, the women were asked to rate, on a scale of 0 to 10, sixteen potentially motivating (...) factors. The information was gathered in the form of an anonymous self‐administered questionnaire. RESULTS: Strong motivating factors (mean score >8) included potential benefit to other women's health, improvement to one's own condition, and participation in scientific advancement. Weak motivating factors (mean score <3) included financial compensation, making one's doctor happy, and use of ‘natural’ products. No difference was detected between clinical and basic science study participants. CONCLUSION: This study is the first study to specifically investigate the factors that motivate women to take part in endometriosis research. Understanding why women choose to take part in such research is important to the integrity of the informed consent process. The factors most strongly motivating women to participate in endometriosis research related to improving personal or public health; the weakest, to financial compensation and pleasing the doctor. (shrink)

This work explores disempowerment caused by discourses surrounding the life-altering gynaecological disease of endometriosis. Despite affecting one in 10 women, the worldwide average diagnosis time is 7.5 years, and it is mainly diagnosed when exploring infertility rather than complaints about incapacitating pain and other associated manifestations. The aim of this article is to identify dis/empowerment caused by discourses in the healthcare and social environment of women as manifested in their accounts of endometriosis experiences. Having been informed and shaped (...) by a corpus analysis of online forum data, this work explores accounts collected through interviews with women who have endometriosis using discourse analytical tools. Through an examination of the dialectics between micro-level language choices inscribing agency, or lack of, and macro-level discourses in the contexts in which women interact, the findings indicate that disempowerment is mostly a consequence of the perceived lack of agency over achieving diagnosis and knowledge of the condition in order to understand and learn coping strategies. The article concludes with implications for endometriosis communication practices and suggestions for broader enquiries in the field. (shrink)

ObjectiveTo investigate the influence of quality of life on unhealthy emotions as well as relevant factors among patients with endometriosis for supporting relevant clinical care.MethodsA convenience sampling method was used to administer questionnaires to 139 patients with endometriosis, using the Hamilton Anxiety Inventory, the Depression Anxiety Scale, and the SF-12 Health Survey Short Form, and the results were analyzed. The SPSS20.0 software was used for statistical analysis on relevant data. If P < 0.05, there was statistical significance.ResultsTwelve-Item Short (...) Form for health survey covered two comprehensive indexes, i.e., physical component summary and mental component summary scores. MCS score was the main factor influencing anxiety and depression in patients with endometriosis; the higher the MCS score, the lower the anxiety and depression degrees in patients with endometriosis. PCS score was a factor influencing anxiety degree; the higher the PCS score, the lower the anxiety degree.ConclusionThe QOL of patients with endometriosis is negatively correlated with anxiety and depression. Therefore, improvement in QOL may help relevant patients to relieve their unhealthy emotions. (shrink)

Disability scholars have critiqued medical models that pathologize disability as an individual flaw that needs treatment, rehabilitation, and cure, favoring instead a social-constructionist approach that likens disability to other identity categories such as gender, race, class, and sexuality. However, the emphasis on social constructionism has left chronic illness and pain largely untheorized. This article argues that feminist disability studies must attend to the common, chronic gynecological condition endometriosis when theorizing pain. Endo is particularly important for FDS analysis because the (...) highly feminized and sexualized nature of endo pain is a major source of disability. Because medical treatments of endo enhance fertility rather than provide pain relief, those with endo must not only have access to medical services to manage their pain, but also demand better medical management of their pain as well as disability accommodations for their pain. Thus, I propose a pain-centric model of disability that politicizes pain through social-constructionist and medical models of disability by attending to the lived experiences of pain. (shrink)

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself. This interdisciplinary book - the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk - aims to better (...) understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain. Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter. This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers. (shrink)

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself. This interdisciplinary book - the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk - aims to better (...) understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain. Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter. This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers. (shrink)

Why do humans menstruate while most mammals do not? Here, we present our answer to this long‐debated question, arguing that (i) menstruation occurs as a mechanistic consequence of hormone‐induced differentiation of the endometrium (referred to as spontaneous decidualization, or SD); (ii) SD evolved because of maternal–fetal conflict; and (iii) SD evolved by genetic assimilation of the decidualization reaction, which is induced by the fetus in non‐menstruating species. The idea that menstruation occurs as a consequence of SD has been proposed in (...) the past, but here we present a novel hypothesis on how SD evolved. We argue that decidualization became genetically stabilized in menstruating lineages, allowing females to prepare for pregnancy without any signal from the fetus. We present three models for the evolution of SD by genetic assimilation, based on recent advances in our understanding of the mechanisms of endometrial differentiation and implantation. Testing these models will ultimately shed light on the evolutionary significance of menstruation, as well as on the etiology of human reproductive disorders like endometriosis and recurrent pregnancy loss. (shrink)

The body in-pain has regularly been relegated to "the dark side"of Western biomedicine, academic research, and even everyday life. Following Starhawk's aptly titled resuscitation of "the dark"as a fertile source of spiritual transformation (Dreaming the Dark, 1982), this essay examines the ways in which intractable pain can open up the body to "a new body in the making" —one that engages with pain kinesthetically as well as discursively. This essay explores three ethnographic cases emerging from three different American fieldvvork sites. (...) An Internet mailing list called WITSENDO constitutes the first case; through often daily participation in this electronic mailing list, women suffering from endometriosis co-create a virtual community that strikingly mitigates their experiences of chronicand intense pain. The shift in how long-term clients of acupuncture care regard needling is the locus of the second case. Acupuncture treatments in American clinical settings often negotiate an American cultural assumption that needles are painful; this second case documents what happens to patients' "fear" of needles and experiences of pain after regular acupuncture treatments. The third case focuses on adepth interview with an American doula who provides labor support for women primarily in hospital settings, this interview explores the conditions under which American women in labor experience pain and how alternative birth professionals define and conceive of pain during childbirth.These three ethnographic cases highlight the cultural construction of pain by delving into the ways that pain sufferers and health care practitioners engage with the body-in-pain. Such engagements occur in the realm of language - both discursive and kinesthetic language. (shrink)