Experiences with the diagnosis and treatment of endometriosis among a racially and ethnically diverse population to improve maternal outcomes: a mixed methods analysis - Endometriosis is a chronic inflammatory disease that affects an estimated 10% of reproductive-age women and approximately 71-87% of women with chronic pelvic pain. Obtaining a diagnosis of endometriosis has historically required that individuals undergo surgery to visualize endometrium-like tissue outside the uterus. Along with pervasive stigmas related to reproductive health and limited provider awareness of chronic pain conditions, this diagnostic standard has contributed to significant diagnostic delays for this population. There is an estimated average 7-12 year gap between symptom onset and appropriate diagnosis for individuals with endometriosis.
Although the above diagnostic delay is well-described in endometriosis care, there is limited understanding of the ways in which diagnostic experiences differ across racially and ethnically diverse populations. Historical literature from the 1950s shows similar incidence of endometriosis among Black and White women. However, Black women are significantly less likely obtain the diagnosis of endometriosis during their lifetime. This disparity is critical to investigate because of the profound impact that misdiagnosis can have on patients' abilities to seek symptom relief and receive appropriate medical and surgical treatments. Such barriers may compound the already significant impact of endometriosis on individuals' quality of life, emotional and mental wellbeing, intimate relationships, and family planning.
Once individuals receive the diagnosis of endometriosis, numerous factors can influence patients' and providers' decisions surrounding how to proceed with treatment. In order to achieve adequate symptom relief, many patients require both medical and surgical therapies.
Use of the International Pelvic Pain Society (IPPS) Pelvic Pain Assessment Form is an underutilized assessment modality that be used to aid in the early diagnosis of endometriosis. This form addresses multiple cause of pelvic pain including endometriosis and fibroids. It guides providers to complete a throughout assessment. Many gynecologists, primary care providers and patients are unaware of this assessment form. The use of this standardized form may help to increase early diagnosis and treatment of endometriosis and therefore improve maternal morbidity and mortality.
This study will involve multiple surveys for both patients and providers. The surveys will evaluate patients' and providers' experience and perceptions with the treatment and diagnosis of endometriosis. We will introduce an intervention and assess if the intervention improves health and maternal outcomes.
