Bleeding disorders in premenopausal women: (another) public health crisis for hematology?

Abstract

Premenopausal women with bleeding disorders represent a major public health problem. Estimates suggest up to 20% of women with menorrhagia have an underlying bleeding disorder (corresponding to a prevalence of 1.5-4 million American women). Von Willebrand disease (VWD) is the most common bleeding disorder among women with menorrhagia, affecting up to 20% of such patients. Besides menorrhagia, important consequences of bleeding disorders in premenopausal women include iron deficiency anemia, miscarriage, postpartum bleeding, uterine bleeding and hysterectomy. These patients face many obstacles in achieving optimum care. Recognition is difficult as women may consider their symptoms "normal" and come to attention only after serious bleeding events. Symptoms of VWD may also overlap with benign conditions, primary providers may not suspect the diagnosis, and convenient hematologic input may be unavailable. Diagnosis is difficult as there is no single definitive test for VWD, and test results are variable, often being affected by extragenic factors, including stress, contraceptives, hormones, and pregnancy. Hemostatic treatment is limited by DDAVP tachyphylaxis, the lack of recombinant VWD concentrates, and the ineffectiveness of hormonal therapy, leading to unnecessary procedures and early hysterectomy. Finally, significant controversy exists regarding classification of type 1 VWD as a disease: given the overlap in symptoms and laboratory assays within the normal population, evaluation for those with VWD might be seen as identification of potential bleeding risk rather than detection of a disease. This symposium seeks to explore these issues in greater detail from the combined perspectives of the obstetrician-gynecologist and the hematologist to promote a better public health approach to this problem.