Prevalence and Impact of Heavy Menstrual Bleeding in Women With von Willebrand Disease Across Age Groups: A Retrospective Study

Authors: Olsson, A; Elfvinge, P; Zetterberg, E; Myrin-Westesson, L

Affiliations: Sahlgrens Univ Hosp, Reg Vastra Gotaland, Dept Med, Gothenburg, Sweden; [Olsson, Anna] Univ Gothenburg, Sahlgrenska Acad, Dept Internal Med, Gothenburg, Sweden; Karolinska Univ Hosp, Coagulat Ctr, Stockholm, Sweden; Karolinska Inst, Stockholm, Sweden; Skane Univ Hosp, Dept Hematol, Oncol & Med Phys, Malmo, Region Skane, Sweden; Gothenburg Univ, Inst Nursing Sci & Hlth, Sahlgrenska Acad, Gothenburg, Sweden.

Publication: Haemophilia; 2025

ABSTRACT: INTRODUCTION Heavy menstrual bleeding (HMB) is a common and burdensome symptom in women with von Willebrand disease (VWD). Although VWD and HMB have been studied, the prevalence and impact of HMB across different age groups remain underexplored. AIM To investigate the prevalence and impact of HMB in women with VWD across different age groups. METHODS This retrospective nationwide study included 136 women aged 18-55 years with type 1 (von Willebrand factor activity <= 0.35 IU/mL), 2 or 3 VWD. Data were collected using a questionnaire assessing HMB and its impact on life, and clinical data were retrieved from medical records. RESULTS HMB was reported by 93% of women in one or more age groups. During adolescence, 85% reported HMB. Reported HMB decreased with age: 63% at 20-29 years, 45% at 30-39 years, and 36% at 40-55 years. Of the 136 women, 60% had sought medical care due to HMB. Forty-nine percent of these had sought medical care at two or more healthcare facilities. The majority (86%) stated that HMB had negatively impacted their lives. Several aspects were affected, including school/work performance, social and physical activities, with a decreasing impact observed with increasing age. Despite the use of hormonal therapy (76%) and/or haemostatic agents (76%), 54% had had iron deficiency. Thirty-five percent were diagnosed after age 19, and 27% were lost to follow-up. CONCLUSIONS The findings emphasize the need for increased awareness during adolescence, more structured follow-up and improved individualized management strategies to prevent and treat HMB.