Date of Award
Open Access Dissertation
Cultural Studies, PhD
School of Arts and Humanities
Dissertation or Thesis Committee Member
Dissertation or Thesis Committee Member
© 2023 Arline K Vortruba
delayed diagnosis, endometriosis, epistemic justice, ideology, menstruation, reproductive justice
An estimated one in ten people born with internal reproductive anatomy, meaning the vagina, cervix, uterus, fallopian tubes, and ovaries, live with endometriosis, which is about 200 million people worldwide. Endometriosis is a disease in which the growth of endometrial-like tissue grows around the reproductive organs, rectum, bladder, or throughout the body in places it does not belong. Endometriosis often leads to devastating effects such as painful, prolonged menstruation, nausea and bowel issues, pain that radiates down the legs, and it is a leading cause of fertility challenges. Endometriosis is diagnosed through laparoscopic surgery, in which a surgeon inserts a small camera into the abdomen to identify abnormal tissue growth. Despite the prevalence of endometriosis, research shows that there is an average ten-year delay to diagnosis even though diagnostic technology is widely used in the United States. Scholarship about endometriosis has predominantly focused on medical diagnosis and treatment options and the public literature about endometriosis has presented self-help recommendations for readers to manage their illness individually. However, less academic or public attention has been paid specifically to the relationship between endometriosis patient and healthcare practitioner to uncover how medical transactions demonstrate why there remains an average ten-year delay in diagnosis of endometriosis. My dissertation is the first scholarly application of a cultural studies analysis to explore why there remains a ten-year delayed diagnosis of endometriosis in the United States. This study combines interviews and autoethnography to explore what the experiences of people with endometriosis demonstrate about how cultural factors contribute to the delayed diagnosis of endometriosis. My project centers the voices of people living with endometriosis, including my own, to shift the perception of what is determined medical knowledge, by positioning qualitative interviews with patients as valid medical research. I conducted interviews with eighteen people living with endo in the United States whose diagnosis took eleven- and one-half years on average. The findings of this case study of endometriosis patient-experiences builds upon literature in the medical humanities, feminist & gender studies, as well as cultural studies. This dissertation analyzes major themes that emerged from the data. For example, many participants said that their doctors normalized menstrual pain by dismissing their reports of painful menstruation, which represent how common cultural perceptions of womanhood inhibit recognition of endometriosis symptoms as medically significant by doctors. Additionally, because in the United States menstruation is taboo, participants reported how they adopted a coping strategy to publicly hide their symptoms in a phenomenon I coin as performing wellness. Performing wellness is a term I define in reference to the phenomenon of people acting healthy or pretending to be in a state of well-being while they are simultaneously hiding symptoms of underlying invisible illness to publicly censor their limitations from their friends, family, or coworkers. Finally, participants shared how their self-education and self-advocacy served a critical role in reaching their diagnosis, which indicates undue cultural pressure for individuals to manage their health issues alone. This study shows that while medical diagnosis of endo is standardized, the process of diagnosis is fundamentally impacted by cultural ideas entrenched in sexist perceptions of menstruation. The findings of this research begin a deeper engagement with the cultural implications of delayed diagnosis, which is a starting point to establish a pathway towards a medical model that will not allow others to suffer in anguish for a decade.
Votruba, Arline Karen. (2023). Voices of Endo: Cultural Factors Influencing Delayed Diagnosis of Endometriosis. CGU Theses & Dissertations, 568. https://scholarship.claremont.edu/cgu_etd/568.