Hormonal therapy does not seem to lighten heavy periods in VWD

Hormonal therapy may not be as effective as previously believed to control heavy menstrual bleeding in women with type 1 von Willebrand disease (VWD), the most common form of the condition.

Despite being commonly used by women with VWD, hormonal therapy did not appear to affect symptoms of heavy menstrual bleeding in those on treatment compared with those who were not. While overall bleeding scores were slightly lower among hormonal therapy users, the difference was not statistically significant.

Although the study was not powered to perform subgroup analyses, researchers noted a trend toward greater benefits in women using oral contraceptives. The sample size, however, was too small to draw definitive conclusions.

“These findings suggest a potential but limited effect of hormone use on bleeding” and underscore “the need for more tailored treatment approaches to effectively manage [heavy menstrual bleeding] in women with VWD,” researchers note.

The study, “Heavy Menstrual Bleeding and Hormonal Therapy in Women with Type 1 von Willebrand Disease Enrolled on the Zimmerman Program,” was published in Clinical and Applied Thrombosis/Hemostasis.

Hormonal therapy for women often used to manage heavy periods

VWD is a bleeding disorder that occurs when the body doesn’t produce enough of a protein called von Willebrand factor (VWF), or when the protein doesn’t work properly. This makes it harder for the blood to clot, leading to abnormal bleeding.

Heavy menstrual bleeding is one of the most common symptoms experienced by women with VWD, occurring in up to 92% of cases. This type of excessive bleeding can seriously impact daily life, causing tiredness, missed school or work days, and potential complications such as iron deficiency and anemia.

Hormonal therapies, including oral contraceptive pills, intrauterine devices, and contraceptive implants, are widely recommended as first-line treatment to manage heavy menstrual bleeding. They can have a significant impact on the body’s clotting system by “influencing VWF levels and activity,” according to the researchers.

“While hormonal therapy is a mainstay of VWD [heavy menstrual bleeding] management, the relationship between VWD and patient-specific factors and the decision to use hormonal therapy remains poorly understood,” they wrote.

To explore this further, researchers analyzed data from 269 women with type 1 VWD who had enrolled in the Zimmerman Program, a U.S. initiative collecting clinical and laboratory data from people with VWD to advance understanding of the disease. They specifically compared bleeding symptoms and clotting factor levels between women who were using hormonal therapy and those who were not.

Women ranged in age from 11 to 76 years, with 86% identifying as white. More than half (57%) had mild to moderate disease. Heavy menstrual bleeding was reported by 94% of the women, with nearly half (47%) saying their symptoms were severe. 

After excluding women who were presumed to have gone through menopause, the researchers focused on comparing data from women who were using hormonal therapy with those who were not.

They found that women on hormonal therapy were slightly younger than those who were not, but VWF levels were similar in the two groups.

A personalized treatment approach is essential for improving outcomes in this population.

On average, women using hormonal therapy reported slightly fewer overall bleeding symptoms compared with non-users, as measured by the International Society on Thrombosis and Haemostasis Bleeding Assessment Tool (ISTH-BAT). However, this difference (6.8 vs. 7.4) was not statistically significant.

Scores on the heavy menstrual bleeding domain were also similar between the two groups (2.5 vs. 2.3).

“The lack of significant differences between groups suggests that while hormonal contraceptives may moderately reduce overall bleeding symptoms, they may not fundamentally alter the clinical profile of women with VWD,” the researchers wrote.

They also noted that while the study wasn’t designed for subgroup comparisons, “trends suggest that oral contraceptive users had higher VWF levels and lower BAT scores.” However, given the small sample size, the researchers suggested that “these findings should be interpreted cautiously.”

In further analyses, they also found more than 70% of women across all ages had bleeding scores that were considered abnormal, regardless of whether they were on hormonal therapy. This means that most women, despite treatment, continued to experience significant bleeding symptoms.

“Given the high prevalence of [heavy menstrual bleeding] and the variability in response to hormonal contraceptives, a personalized treatment approach is essential for improving outcomes in this population,” the researchers wrote. “Future research should focus on optimizing individualized management strategies to address the diverse needs of women with VWD.”