By: Linda Villarosa
August 27, 2002
Several years ago, Monique Brown, a writer and editor from Brooklyn,
visited a physician, worried about her heavy periods and bleeding
between menstruation. Her disorder was diagnosed as fibroids, she said,
noncancerous tumors that can grow in the uterus.
"It's normal," she recalled being told. "Everybody has them."
Ms. Brown was sent home with a prescription for birth control pills
to help regulate her period. But after six months and several more
doctors, she said, she watched her abdomen expand and decided to go to
a fibroid specialist. From the specialist she received the news that at
age 27 she was "headed for a hysterectomy."
"How could something go from `It's no problem,' to, `You need a
hysterectomy'?" Ms. Brown, now 32, remembered asking. "I was shocked. I
wanted to have children. But at that point, I had no husband and no
prospects."
After more doctors' visits and bleeding so heavy that she suffered
severe anemia and had to wear adult diapers, Ms. Brown found a
physician who removed four fibroids using a procedure that removes
tumors while leaving the uterus intact, a myomectomy.
She was so frustrated by her seven-year experience, she said, and so
alarmed on learning that fibroids were much more common in
African-American women than women of other races that she wrote a
self-help book, "It's a Sistah Thing: A Guide to Understanding and
Dealing With Fibroids for Black Women," which Dafina Kensington will
publish next month.
"Even if fibroids are a common problem," Ms. Brown said, "if they
are causing this kind of suffering, there needs to be a solution. But
not a solution that prevents women from ever having children."
Fibroids, the most common tumor in women's reproductive tracts,
generally develop in women in their 30's and 40's. In the past, few
alternatives, if any, to removing the uterus were available to
eliminate the fibroids and their often debilitating side effects. If
the symptoms were severe enough, most women accepted that treatment,
however unhappily, because, in most cases they had already had children.
But as increasing numbers of women have chosen to delay childbirth,
they often learn they have fibroids before they have had children.
Fibroids can also cause pregnancy complications and infertility. In
the last 10 years, more women like Ms. Brown have pressed for
information about causes of fibroids and for alternatives to
hysterectomies.
Women's health experts have aggressively questioned why the
hysterectomy, performed an estimated 600,000 times a year in the United
States, remains the fallback treatment for fibroids.
"The demographics of childbearing have dramatically changed the
scope of fibroid treatment," said Dr. Elizabeth Stewart, clinical
director of the Center for Uterine Fibroids at Brigham and Women's
Hospital in Boston.
"It is very obvious to us that we are seeing women in their 30's and
even 40's developing fibroids before childbearing, which was so rare in
our mothers' day," Dr. Stewart said. "The feeling has long been that
hysterectomy cured the problem and finding another avenue wasn't
important. Women have been instrumental in changing that perception."
In the spring, Senators Jean Carnahan, Democrat of Missouri; James
M. Jeffords, independent of Vermont; and Barbara A. Mikulski, Democrat
of Maryland, introduced the Uterine Fibroids Research and Education Act
of 2002, which joins a similar House bill introduced last year.
The legislation calls for allocating $10 million a year for four
years toward research on fibroids through the National Institutes of
Health. That would be a twentyfold increase over the projected budget
for fibroid research for this year. The bill also asks for an
educational campaign.
"This is a disease that is important to fertility, longevity and
health of millions of women, and it is being ignored," said Carla
Dionne, who lobbied for the measures and is the executive director of
the National Uterine Fibroids Foundation.
"There's been a lot of lip service about how high the hysterectomy
rate is," she said, "but so little energy goes toward looking at the
underlying reasons why."
Even with additional treatments, alternatives to hysterectomies are
far from perfect. Research has increased in the last 10 years, but
financing remains scarce. This year, the National Institutes of Health
allocated $3 million to study fibroids and endometriosis, which affects
the lining of uterus. In comparison, research into urinary tract
infections received nearly $15 million.
The relatively low financing, said Dr. Vivian Pinn, the
director of the N.I.H. Office of Research on Women's Health, makes it
hard to generate excitement among scientists for fibroid research.
"The scientific and health care communities need to recognize that
this is not just something that they have known about for years," Dr.
Pinn said, "but a very serious problem for women and their families."
Dr. Pinn said that many women in her family had hysterectomies because of fibroids and that she had the condition.
"We at the N.I.H. need to encourage research and scientists need to pay more attention to the topic," she said.
Dr. Phyllis Leppert, chief of the reproductive sciences branch of
the National Institute of Child Health and Human Development, said her
agency was seeking additional research on the subject. "We made it a
priority in our branch two years ago, and have tried to get grants on
the topic," she said. "We've seen an increase in interest, but we
definitely need more scientists to get excited about the area."
Experts in the field say that at least 30 percent of all women have
fibroids, and most suggest the figure is much higher. Some estimate 70
percent.
In a study that is often quoted but that will not be published until
December, researchers at the National Institute of Environmental Health
Sciences conducted sonograms on more than 1,000 women from 35 to 49
randomly selected from a health maintenance organization in Washington
and found surprisingly high rates of fibroids. Fifty percent of white
women had fibroids and 72 percent of African-American women did.
Reproductive hormones, particularly estrogen, stimulate fibroid
development and growth. Fibroids tend to develop in the reproductive
years and shrink after menopause. Older women with fibroids who are not
bothered by severe symptoms often just wait until they go away as
hormones decrease.
No one is clear why fibroids are more common in black women than in
women of other races. Figures from the Nurses' Health Study show that
the incidence rate for uterine fibroids among blacks is three times as
great as it is among whites and that black women have fibroids
diagnosed earlier than their white counterparts. Recent studies have
pointed to a genetic link, and fibroids tend to run in families.
Last year, the Agency for Healthcare Research and Quality, in the
Department of Health and Human Services, issued an extensive report on
managing fibroids that found a "remarkable lack of high quality
evidence supporting effectiveness of most interventions for symptomatic
fibroids."
"Patients, clinicians, and policy makers," the report said, "do not
have the data they need to make truly informed decisions about
appropriate treatment."
Women and their physicians are left to muddle through the options.
Although hysterectomy may be the best treatment for some women,
myomectomy is often a better choice, because it allows the removal of
the fibroids while keeping the uterus intact. Depending on the size and
location of the fibroids, the procedure is sometimes performed with a
laparoscope or hysteroscope, telescopelike instruments that permit the
women to avoid abdominal surgery.
The major drawback of myomectomy, however, is that fibroids often
return. Dr. Stewart said studies showed that after a myomectomy a woman
had a 50 percent chance that another fibroid would be identified on an
ultrasound in 10 years and a 15 percent chance that another operation
would be performed.
Uterine artery embolization, introduced in the United States in the
mid-1990's, is an increasingly popular treatment. The procedure,
performed by an interventional radiologist, blocks the blood flow to
the tumor, causing it to shrink. About 20,000 to 25,000 procedures have
been performed worldwide, most in the United States.
Although the procedure is less invasive than surgery, little is
known about the long-term effects, particularly the effects on future
fertility.
"Though U.A.E. is a relatively safe option for women and is
increasingly available," Dr. Stewart said, "there is the concern that
it might not be optimal for women who want children. The ovaries share
blood supply with the uterus, and it's not clear how cutting off the
blood flow will affect the ovaries and the uterus, as well."
Despite the lack of research dollars, scientists are looking at
causes and treatment of fibroid tumors. The laboratory of women's
health at the National Institute of Environmental Health Sciences in
Research Triangle Park, N.C., has begun the Fibroid Growth Study to
look at why some fibroids grow to become problems for women and others
do not.
The lead investigator of the study, Dr. Barbara Davis, said she hoped to have some results next year.
"We want to find out what is it that makes tumors grow and what are
the molecular and tissue changes that occur over time associated with
growth," Dr. Davis said.
The Center for Uterine Fibroids in Boston has enrolled 465 pairs of
sisters to look for specific genes that may cause fibroids. Researchers
there are also examining the effectiveness of focused ultrasound
heating, monitored and controlled by magnetic resonance imaging, as an
alternative to surgery.
In Fairfax, Va., the Society of Interventional Radiology, in
connection with Duke University, is compiling a registry to study the
effects of uterine artery embolization and compare it to other
treatments.
As the science inches forward, Ms. Dionne of the National Uterine
Fibroids Foundation urged women to learn about fibroids and examine all
options. She learned she had fibroids 17 years ago, at 28, she said,
and was repeatedly told that she needed a hysterectomy. She suffered
with bleeding that she says "took over my life" until she had
embolization in 1998.
"You have to know," she said, "what choices are out there and know how to ask for them."
For the original version of this article: Women Seek Choices When Fibroid Tumors Strike
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