An Altered Perception of Normal: Understanding Causes for Treatment Delay in Women with Symptomatic Uterine Fibroids

Background: Uterine fibroids are benign tumors that are the leading cause of hysterectomy in the United States. Despite their high prevalence and associated morbidity, there are little qualitative data characterizing what drives women's treatment-seeking behavior for their fibroids. Methods: Women with symptomatic or recently treated uterine fibroids completed in-depth interviews and demographic surveys. Interviews were transcribed verbatim and uploaded to NVivo version 10 for data management and thematic coding. Coders identified major themes and subthemes that emerged from the interviews. Results: Sixty women (n = 60) completed the interviews. The kappa among coders was 0.94. The mean age of participants was 43.0 ± 6.8. 61.7% of participants self-identified as African American, 25.0% as Caucasian, 8.3% as Hispanic, and 5.0% as Asian. Many women reported obtaining a delayed diagnosis for their uterine fibroids despite experiencing severe symptoms. There were five subthemes that identified why women delayed seeking treatment, which included the perception that their symptoms were "normal," they had a low knowledge of fibroids, they did not perceive themselves to be at risk for fibroids, they engaged in avoidance-based coping strategies, and/or they dissociated themselves from their fibroids. Conclusions: Many women with symptomatic fibroids live with this condition chronically without seeking care. It appears that for some, limited knowledge regarding fibroids and normal menstruation may lead to a distorted view of what is normal with regard to uterine bleeding, resulting in limited treatment seeking behavior. Others know their symptoms are abnormal but simply avoid the problem. There is a need for patient-centered and community-based education to improve women's knowledge of fibroids and symptoms and to promote treatment options.