Navigating undone science: The search for adequate endometriosis care

Endometriosis is an estrogen-dependent disease in which tissue similar to the lining of the uterus grows elsewhere in the body leading to a variety of symptoms including heavy and prolonged menstruation, chronic pain, cysts, infertility, and gastrointestinal issues. Despite being one of the most common gynecologic conditions, much remains unknown about potential risk factors for endometriosis, its etiology, and treatment options. First and second-line biomedical treatment options, complementary and alternative medicine, and lifestyle changes are all treatment options that people living with endometriosis (PLE) leverage to manage their symptoms. This article draws on in-depth interviews with 52 people living with endometriosis (PLE) in the United States to examine how PLE develop care strategies in order to manage living with endometriosis. Like others living with uncertain conditions, PLE find a variety of sources to learn about their condition and develop strategies to live well. PLE frequently blend treatment options, merging pharmaceutical treatment, complementary and alternative medicine (CAM), and lifestyle changes. We document how PLE develop blended care regimens, what constitutes their care regimens, and how PLE must grapple with the epistemic tensions they face as they navigate various knowledge sources.