Heavy menstrual bleeding prevalent in women with VWD
Study also finds many have low iron stores, face disruptions to daily life
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About two-thirds of women with von Willebrand disease (VWD) experience heavy menstrual bleeding, according to a study from Sweden.
Data also showed that many of them had low levels of ferritin — a protein that stores iron inside cells — and faced significant disruptions to daily life. This highlights the need for regular follow-up and proactive iron management and “underscores the need for improved long-term care strategies to prevent [these] complications,” researchers wrote.
The study, “Prevalence of heavy menstrual bleeding, iron deficiency, iron deficiency anemia, and treatment in women with von Willebrand disease — a cohort study,” was published in Research and Practice in Thrombosis and Haemostasis.
Impact of heavy menstrual bleeding assessed
VWD is a bleeding disorder that results from insufficient production or dysfunction of a clotting protein called von Willebrand factor (VWF). This deficiency hampers the blood’s ability to clot effectively, resulting in abnormal bleeding.
Heavy menstrual bleeding is a significant symptom of VWD that’s experienced by up to 80% of women with the disease. This type of excessive bleeding can severely disrupt everyday life, leading to fatigue, absence from school or work, and complications such as iron deficiency and anemia.
While hormonal therapies, such as oral contraceptive pills or intrauterine devices, are the usual treatment for heavy menstrual bleeding, they may be inadequate for women with VWD who might require more specialized interventions.
Given the significant challenges associated with heavy menstrual bleeding in these patients, “more knowledge is needed regarding the treatments offered to patients and their effectiveness,” the researchers wrote.
To explore this further, researchers conducted a survey among 208 women with VWD, ages 18 to 55, enrolled in the Swedish National Registry for bleeding disorders.
They assessed the prevalence of heavy menstrual bleeding, iron deficiency, and iron deficiency anemia, as well treatment effectiveness. The impact of heavy menstrual bleeding on the personal, professional, and social lives of these women was also evaluated.
Prevalence high among younger women
A total of 136 women participated in the study, with the majority (35%) having VWD type 1.
Heavy menstrual bleeding was a significant concern, with 66% of women who menstruated in the previous year reporting it. The prevalence of heavy menstrual bleeding was particularly high among younger women, with more than 70% of those between the ages of 18-30 and 31-40 indicating they had experienced it.
A total of 37% of menstruating women used hormonal treatment for heavy menstrual bleeding, while 69% reported the use of another type of medication. The use of tranexamic acid, an antifibrinolytic agent that works to prevent blood clots from breaking down, was reported by 64%, followed by factor concentrates (18%), and desmopressin (8%).
Overall, 24% of participants experienced forms of bleeding beyond heavy menstrual bleeding, the most frequent being nosebleeds, followed by bleeding associated with gynecological surgeries or minor surgeries and postpartum hemorrhage.
Of the women who menstruated in the previous year, 26% reported prolonged menstruation lasting eight days or more, with 53% reporting consistently soaking through one or more sanitary products every two hours on multiple days. Additionally, 37% needed to use more than one sanitary product at a time, 47% changed their sanitary protection overnight, and 72% reported passing blood clots.
Ferritin levels low for many participants
The study employed the Pictorial Blood Loss Assessment Chart (PBAC) to quantify menstrual bleeding. Among the 47 women who completed the PBAC, 66% scored at least 100, indicating heavy menstrual bleeding. The median PBAC score for the entire group was 148, with substantial variance (5 to 673 points).
Blood work data showed that 18% of women had hemoglobin levels below 12 g/dL. Hemoglobin is the oxygen-carrying protein inside red blood cells; low hemoglobin levels are an indication of anemia.
Ferritin levels were also concerning, with 45% of the women exhibiting levels below 30 mcg/L, and 20% showing levels below 15 mcg/L.
Among those who menstruated in the previous year, 62% had ferritin levels below 30 mcg/L, highlighting the significant impact of heavy menstrual bleeding on the body’s iron stores.
More than half of the women who had menstruated in the previous year (55%) stated that menstruation affected their daily lives, particularly physical activity (63%) and work or school performance (61%). For those who reported heavy menstrual bleeding, the impact of menstruation was even greater. Women with a PBAC score of 100 or higher (72%) were more likely to report a general impact on their lives compared with those who had a lower score.
Overall, this comprehensive study underscores the considerable burden of heavy menstrual bleeding in women with VWD, as well as its detrimental effects on physical health, mental well-being, and everyday life. These findings highlight the need for targeted interventions and better management strategies for heavy menstrual bleeding in this patient population, according to the researchers.
