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 remains 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 emphasise the need for increased awareness during adolescence, more structured follow-up and improved individualised management strategies to prevent and treat HMB.