JOURNAL OF WOMEN’S HEALTH

Volume 16, Number 9, 2007

© Mary Ann Liebert, Inc.
DOI: 10.1089/jwh.2007.CDC11

Report from the CDC

Women with Bleeding Disorders

VANESSA R. BYAMS, M.P.H.

ABSTRACT

Menorrhagia, or excessive menstrual bleeding, is a common clinical problem affecting repro-

ductive-age women; however, the cause is undetermined in 50% of cases. Von Willebrand dis-
ease (VWD) or other bleeding disorders may be the underlying source of heavy bleeding. Wo-
men with menorrhagia and/or VWD are at increased risk for several conditions including
anemia, bleeding during pregnancy, post-partum hemorrhage, and reduced quality of life
(OOL). Proper diagnosis and management can decrease complications and unnecessary surgi-
cal interventions. The Division of Blood Disorders (DBD) at the Centers for Disease Control
and Prevention (CDC) has implemented studies to ascertain physician awareness of bleeding
disorders, establish prevalence in the U.S., and determine the best treatment options.

INTRODUCTION VWD is the most common bleeding disorder,

affecting just over 1% of the general population.5

M ENORRHAGIA, Or excessive menstrual bleed-

ing, is a common clinical problem that affects
8%–10% of women of reproductive age.1 It has been
defined as menstrual blood loss of at least 80 mL
per menstrual cycle.2 Because menorrhagia has
many physical causes, including uterine fibroids,
endometriosis, thyroid problems, and cancer, the
traditional focus of physicians attempting to de-
termine the cause of their patients’ menorrhagia
has been on organic pathology of the uterus itself.
However, one study showed that a cause for men-
orrhagia is never identified in approximately 50%
of cases.3 The results of recent studies indicate that
between 5% and 24% of women with menorrhagia
may have undiagnosed von Willebrand disease
(VWD),4 and as many as 2 million women in the
United States may have either VWD or another
type of bleeding disorder without knowing it.5
It is caused by a deficiency in the body’s ability
to make a protein, von Willebrand factor, which
localizes platelets to the site of bleeding and helps
blood clot. Although VWD occurs with equal fre-
quency among men and women, women are
more likely to experience symptoms of VWD be-
cause of the increased bleeding it causes during
their menstrual periods, during pregnancy, and
after childbirth.
Women with menorrhagia or VWD or both
are at increased risk for pain during menstrua-
tion, anemia, hospitalizations, blood transfu-
sions, limitations in daily activities, time lost
from work or school, adverse psychosocial ef-
fects, and a reduced quality of life (QOL). The
results of a recent study showed that women
with VWD reported poorer health-related QOL
than women in the general population.6 Women

Division of Hereditary Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers
for Disease Control and Prevention, Atlanta, Georgia.
The findings and conclusions in this paper are those of the author and do not necessarily represent the views of
the Centers for Disease Control and Prevention/the Agency for Toxic Substances and Disease Registry.

1249
1250
with menorrhagia often undergo unnecessary
surgical interventions to relieve heavy men-
strual bleeding. At least 60% of women with un-
controlled menorrhagia undergo hysterec-
tomies or other surgical procedures, including
endometrial ablation and dilatation and curet-
tage.7–9 With proper diagnosis of their condi-
tion, many women with bleeding disorders
could avoid these complications and surgeries,
decrease their level of menstrual bleeding, and
improve their QOL. The Division of Blood Dis-
orders (DBD) at the Centers for Disease Control
and Prevention (CDC) has worked to assess
physicians’ awareness of bleeding disorders,
determine the prevalence of bleeding disorders
among women, and evaluate options for treat-
ing women with these disorders. Descriptions
of some of the DBD’s activities within their Wo-
men with Bleeding Disorders program follow.
DBD ACTIVITIES RELATED TO
BLEEDING DISORDERS
AMONG WOMEN
In 1996, DBD sent 983 Georgia members of the
American College of Obstetricians and Gynecol-
ogists (ACOG) a survey questionnaire concern-
ing their treatment of patients with menorrha-
gia.10 Respondents were asked to estimate the
number of patients with heavy menstrual bleed-
ing they saw each year, how likely they would be
to consider various diagnoses to explain the
heavy bleeding, the number of patients with men-
orrhagia who they referred to other providers,
and the prevalence of bleeding disorders among
women with menorrhagia. On average, respon-
dents reported that approximately 8% of their pa-
tients complained about menorrhagia and that
they believed anovulatory bleeding was the prob-
able cause of menorrhagia in about 74% of re-
productive-age women. Only 4% of respondents
said they would consider VWD as a probable
cause of menorrhagia, and only 3% reported re-
ferring menorrhagia patients to other medical
specialists for further testing. Respondents’ aver-
age estimate of the prevalence of bleeding disor-
ders among women with menorrhagia was
1%.10
The results of two European studies showed
that the prevalence of VWD or other bleeding dis-
orders among women with menorrhagia was
much higher than perceived by U.S. physicians,
with estimates of 17% and 37%.11,12 To determine
BYAMS
the prevalence of bleeding disorders among U.S.
women with menorrhagia, DBD collaborated
with Emory University in 1997 to conduct a case-
control study of women in Atlanta.13 The study
population consisted of reproductive-age women
with menorrhagia-related diagnoses in their
medical record and women without such diag-
noses who were members of the same health
maintenance organization (HMO). The DBD he-
mostasis laboratory analyzed venous blood sam-
ples from study participants to determine if they
had coagulation, platelet, or factor abnormalities.
Of 121 menorrhagia patients tested, 10 (8.2%) had
VWD or another factor deficiency, compared
with only 1 (0.8%) of 123 controls. Like the pre-
viously cited European studies, the DBD/Emory
study showed that the prevalence of VWD or
other blood factor deficiency among women with
menorrhagia was much higher than it is gener-
ally perceived to be by U.S. physicians. This dis-
parity between the actual prevalence of bleeding
disorders among women with menorrhagia and
what U.S. physicians believe it to be is glaring
and highlights the need for more attention and
awareness regarding this health issue among wo-
men.
While working to establish the prevalence of
VWD in the U.S. population, DBD sought to eval-
uate treatment options for women with bleeding
disorders. In 2001, DBD conducted a multisite,
treatment efficacy trial comparing the effects of
intranasally administered desmopressin (IND-
DAVP) and orally administered tranexamic acid
(TA). Women aged 18–50 with menorrhagia were
recruited for the study from six U.S. medical cen-
ter sites. Participants completed a baseline QOL
assessment, a bleeding history questionnaire, and
a pictorial blood assessment chart (PBAC) of their
menstrual blood loss (MBL).14 They also submit-
ted blood samples, which were analyzed for
bleeding disorders; women with abnormal labo-
ratory results were then invited to participate in
a randomized, crossover treatment trial. Partici-
pants enrolled in this phase of the study took each
study medication for two menstrual periods and
were asked to assess their QOL and MBL after
each treatment. Study enrollment ended in Sep-
tember 2006; analyses are currently underway to
determine if the QOL and MBL of study partici-
pants improved as a result of taking the medica-
tions. We hope that the results of these analyses
will enhance management options and reduce
surgical interventions for women with bleeding
disorders.
WOMEN WITH BLEEDING DISORDERS
DIRECTIONS OF FUTURE
DBD RESEARCH
Although researchers have made much progress
in establishing the prevalence of bleeding disorders
among women and evaluating the management
options available to them and their physicians,
DBD remains committed to expanding research in
the area of women with bleeding disorders. DBD
and its partners are currently developing a sur-
veillance instrument to assess the prevalence of
various problems among women and girls with di-
agnosed bleeding disorders who are receiving care
at a network of federally funded hemophilia treat-
ment centers (HTCs). HTCs were originally created
to treat males with hemophilia; however, the num-
ber of females with bleeding problems seeking care
at these centers has increased steadily over the last
10 years from 4800 to almost 9000. The main pur-
pose of this data collection is to better characterize
reproductive and other symptoms among women
with blood disorders over time. DBD will also col-
lect data on diagnoses, treatments, HTC referral
patterns, and study participants’ QOL.
Although menorrhagia is highly prevalent
among women with bleeding disorders, it is
not the only gynecological manifestation of these
conditions: bleeding disorders have also been
associated with an increased risk for ovarian
cysts, endometriosis, fibroids, miscarriage, bleed-
ing during pregnancy, and postpartum hemor-
rhage.15 However, because few prospective, case-
control studies have compared the prevalence of
these conditions among women with bleeding
disorders with the prevalence among controls, a
causal relationship has not been established. DBD
plans to expand its research in order to elucidate
the association between bleeding disorders and
women’s risks for various adverse obstetrical and
gynecological outcomes.
The ultimate goals of the DBD Women with
Bleeding Disorders program are to improve wo-
men’s QOL through the recognition, proper di-
agnosis, and management of bleeding disorders;
reduce unnecessary surgical procedures among
women with these disorders; and contribute to
the development of a national protocol for the di-
agnosis, treatment, and management of bleeding
disorders among women. Through the current
and future activities described here, the program
is making substantial progress toward meeting
these goals as well as in supporting its mission to
prevent and reduce morbidity associated with
bleeding disorders among women.
1251
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Address reprint requests to:
Vanessa R. Byams, M.P.H.
Division of Hereditary Blood Disorders
National Center on Birth Defects and
Developmental Disabilities
Centers for Disease Control and Prevention
1600 Clifton Road NE, MS E-64
Atlanta, GA 30333
E-mail: vbyams@cdc.gov