“I Feel Chained Right Now”: A Qualitative Study Exploring Treatment Decisions Among Women With Abnormal Uterine Bleeding

INTRODUCTION: Abnormal uterine bleeding (AUB) is a common but heterogeneous condition affecting women of reproductive age and is caused by both systemic and structural pathologies. To address its varied etiology, patients may be offered multiple interventions for AUB: medical or surgical, palliative, or curative, as well as input from gynecologic or non-gynecologic subspecialists. We know little about the factors that influence the patient’s treatment decisions, especially when childbearing is no longer a consideration and hysterectomy is an option. OBJECTIVE: This study aims to explore women’s lived experiences of AUB and describe how women approach treatment decisions when offered both medical and surgical interventions, including hysterectomy. METHODS: This is a qualitative study based on in-depth interviews conducted via telephone or in-person. We recruited participants from outpatient gynecology offices at a large suburban academic medical center. Inclusion criteria were English and Spanish-speaking premenopausal women aged 40 and above with a diagnosis of AUB due to any etiology who were offered both medical and surgical treatment, including hysterectomy. We tape-recorded and transcribed all interviews. Spanish interviews were conducted, transcribed, and coded in Spanish. We utilized Atlas TI Cloud to analyze the data using Grounded Theory Methodology. Two researchers coded each interview and met to discuss codes. Any disagreements among coders were resolved by a third researcher. Recruitment was concluded when thematic saturation was reached. RESULTS: We completed 25 interviews between January 2023 and March 2024. Participants were premenopausal, aged 40 to 56 years, and parity ranged from 0 to 9. Treatment choices among participants included hormonal and non-hormonal medical management, endometrial ablation or uterine artery embolization when appropriate, minimally invasive hysterectomy, and undecided. Figure 1 summarizes the demographic data of study participants. Qualitative analysis confirmed themes of impairment with work, sexual intercourse, and relationships and revealed themes of fear and uncertainty regarding both medical and surgical treatments. Stories recounting delays in diagnosis and treatment were common with a need to see multiple providers. Side effects of hormonal medications or recovery after surgery were frequently cited as treatment-related concerns. Subjects expressed a need to prioritize personal treatment goals in the face of social and community influences such as barriers to seeking care and the fear of becoming “less of a woman” after hysterectomy. Ultimately, most participants prioritized efficacy in their final treatment decision. Figure 2 shows select participant quotes illustrating the major themes. CONCLUSIONS: Early counseling incorporating a range of medical and surgical treatment options, including hysterectomy, is important to patients with AUB. Identifying patients’ priorities in spite of societal barriers may improve satisfaction and reduce delays in obtaining their preferred treatment.