Presentation Details
| “There is so much power in just believing someone”: Understanding the lived experiences of women with heavy vaginal blood loss Fartoon M Siad1, Andrea Lausman2, Carolyn Snider3, Martina Trinkaus1, Filomena Meffe2, Michelle Sholzberg 1, 4. 1Department of Medicine, University of Toronto, Toronto, ON, Canada.2Department of Obstetrics and Gynecology, Toronto, ON, Canada.3Division of Emergency Medicine, Toronto, ON, Canada.44Department of Laboratory Medicine and Pathobiology, St.Michael’s Hospital, Li Ka Shing Knowledge Institute, University of Toronto, Toronto, ON, Canada |
Abstract
Background: More than half of reproductive-age women experience heavy vaginal blood loss (VBL), whether menstrual, lochial, or otherwise, and yet only 5% seek medical attention for evaluation. In literature, those who experience heavy VBL often experience stigma, diagnostic uncertainties, interference with day-to-day activities, and confusion surrounding what constitutes ‘normal’ bleeding. Over the last century, women of reproductive age (WRA) experience menarche earlier, menopause later and are having fewer pregnancies. Thus, WRA are bleeding for longer periods of time which amplifies the impact of under/mis-recognition, mis-diagnosis and healthcare provider dismissal of heavy VBL. There is an urgent need to better evaluate and manage heavy VBL in a manner informed by patient voices. Objective: To document and understand the lived experiences of patients with heavy VBL using qualitative methods. Methods: Recruitment of women from St. Michael’s Hospital Hematology Clinic in Toronto, Ontario, Canada to elucidate narratives on the dimensions of vaginal bleeding-related experiences and healthcare interactions. Ethics approval was obtained through Unity Health Toronto Research Ethics Board (REB 21-126). Eligibility was determined by both clinical and self-reported heavy VBL and complications. We used semi-structured interview guide informed by literature to conduct the interviews lasting 30 – 45 minutes using virtual communication until qualitative thematic saturation was reached. Interviews were audio-recorded and transcribed verbatim. Coding and thematic analysis was performed with NVivo. Results: Ten participants with heavy vaginal bleeding, self-identified as women, with equitable distribution across race and ethnicity with 50% White women, 40% Black women, and 10% Asian women were included in the study. 50% had a bachelor’s degree and 20% had a graduate degree. Duration of excessive bleeding was over 10 years for 90% of women with prolonged time to referral to Hematology or Obstetrics/Gynecology. All participants experienced pain with heavy vaginal bleeding and were iron deficient. Emerging common themes include: shame around bleeding symptoms and concerns about over-disclosing, normalization of heavy vaginal bleeding leading to delayed diagnoses and treatment, lack of believing symptoms by healthcare providers once disclosed leading to mistrust of healthcare system, and fear of “feeling better”. Discussion: Heavy VBL is exceedingly common, has important clinical and psychosocial ramifications, yet it continues to be stigmatized, underdiagnosed, and poorly treated. Preliminary findings of this study indicate themes of shame, normalization of pathology, mistrust of healthcare systems, fear of feeling better. Structural sexism and discrimination lead to normalization, desensitization, dismissal and blame placement. Targeted knowledge translation rooted in intersectionality-enhanced theory- and evidence-based implementation science is urgently required in this space to break cycles of harm and injustice.
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No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.