The growing awareness to screen women with menorrhagia for an underlying bleeding disorder has led to an increase in enrollment of identified cases in Hemophilia Treatment Centers (HTCs). However, the outcome of menorrhagia management in these women has not been well-described.

Objective: To determine the efficacy/outcome of the management of bleeding disorder-related menorrhagia in patients enrolled within the HTC network.

Patients and Methods: Registry study of initial data collection of retrospective obstetrical and gynecological events with prospective yearly follow-up for 5 years for new obstetrical and gynecological events.

Results: 99 women from five HTCs in New York-New Jersey Region II have been registered to date, mean age 38±16.3, median age 40. Diagnoses are: von Willebrand disease (VWD) in 71%; thrombocytopathy in 6%; factor deficiency in 23%. Menstrual status and outcomes presently:

⇒32/99 (32%) are not menstruating due to hysterectomy or post/peri-menopausal status; 13/99 have undergone a hysterectomy (n=10) or endometrial ablation (n=3) for menorrhagia control; in 7/10 of the women undergoing a hysterectomy for menorrhagia control, the diagnosis of VWD was previously established; 6/7of these women attempted medical treatment prior to hysterectomy

⇒68/99 (68%) are presently menstruating. Of those menstruating, menstrual status is as follows:

  • Normal menses: 23.5% (16/68)

  • Menorrhagia under control: 23.5% (16/68); of these patients; 11/16 have achieved control with oral contraceptive(OC), the remaining 5 patients have achieved control with intranasal DDAVP or Amicar

  • Menorrhagia presently: 53% (36/68); 22/36 (61%) have undergone a course of ineffective menorrhagia treatment including intranasal DDAVP in 17/22

Conclusions: The majority of women with menorrhagia enrolled in HTCs have persistent menorrhagia despite evaluation and management within the HTC network. Only a small proportion have menorrhagia control due to intranasal DDAVP use and a proportion still necessitate hysterectomy for menorrhagia control. The value in United States HTCs of hemostatic measures alone such as intranasal DDAVP in the management of bleeding disorder related menorrhagia is uncertain at this time. Further study of combined therapy (intranasal DDAVP and Amicar ± OC) and novel approaches (levonorgestrel-intrauterine device) is warranted as are efforts to procure tranexamic acid for use in the U.S.