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http://www.nytimes.com/2002/08/27/health/womenshealth/27TUMO.html

Women Seek Choices When Fibroid Tumors Strike

By LINDA VILLAROSA

everal 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."

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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.

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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."

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