The prevalence and impact of bleeding disorders in women is not sufficiently acknowledged, with the organisation of care traditionally biased towards boys and men with haemophilia. In 2017, the European Haemophilia Consortium surveyed women with bleeding disorders, national member organisations (NMOs) and treatment centres to assess the impact of bleeding disorders in women in four domains: physical activity, active life, romantic and social life, and reproductive life. Most women had von Willebrand disease (VWD) or described themselves as a carrier. All reported a negative impact on physical activity, active life and romantic and social life. Up to 70% of women in all groups reported that their bleeding disorder had a significant impact on their ability or willingness to have children, or prevented it. Heavy menstrual bleeding was reported as the having the most significant impact on daily life. Women face barriers to diagnosis and care, including difficulty obtaining a referral and lack of knowledge among general practitioners and gynaecologists. While bleeding disorders share many symptoms, including bleeding after minor injury and trauma, the link between heavy menstrual bleeding and a bleeding disorder often goes unrecognised and its severity is underestimated. Screening is not offered to all eligible women despite the availability of long-established management guidelines; clinical tools to estimate severity may be unreliable. Failure to recognise a bleeding disorder in a woman is a multifactorial problem that is partly due to cultural reluctance to discuss menstruation. Public awareness campaigns are seeking to correct this, and many NMOs involve women in their initiatives and provide women-centred activities. However, a transformation in diagnosis is needed to shift the focus of treatment centres beyond boys and men with haemophilia, and to acknowledge the prevalence and severity of bleeding disorders in women.
Prolonged menstrual bleeding interferes with daily life and causes marked blood loss, resulting in anaemia and fatigue. Treatment centres should address the issue of heavy menstrual bleeding (HMB) with pre-pubertal girls in advance of their first period, in order to best prepare them. It is common for a bleeding disorder to be overlooked in primary care and in gynaecology clinics, and women sometimes struggle to get a correct diagnosis. There are cultural taboos that inhibit open discussion of menstruation, and women tend to minimise the severity of their symptoms. Health professionals should work to destigmatise the issue and seek an accurate account of bleeding severity, with diagnosis and treatment provided in a joint clinic combining gynaecology and haematology expertise. Treatment should be individualised, taking into account personal, social and medical factors, with the aim of improving quality of life. Great care is needed with regard to choice of language when talking about treatment, and treatment centres should consider offering open access to women who need support in dealing with adverse effects. National member organisations have an important role to play in educating people with bleeding disorders, health professionals and the wider public about the burden of HMB associated with bleeding disorders.