Dr. Cynthia Morton is seeking women who have fibroid tumors for a "sister study" to help researchers better understand and treat these common tumors. A part of her study has been funded by the NIH.
Photo courtesy of Brigham and Women's Hospital
It's estimated that about three-quarters of American women of childbearing age have fibroid tumors in their uteruses. These benign tumors can cause not only pain, anemia, excessive menstrual bleeding, and infertility — they are also responsible for a third of the 200,000 hysterectomies in the United States each year.
The mental and physical toll of fibroid tumors in women can make life miserable.
"I was diagnosed with uterine fibroids after the birth of my second child, around age 30," says one woman we will call Susan. "I tolerated the
menstrual cramping and heavy flow associated with fibroids by taking Motrin as often as permitted. But over time, my symptoms got worse — headaches, fatigue, anemia, incontinence, and pain during intercourse. I used panty liners on a daily basis to protect against
urine leakage."
For more than seven years, Susan endured these symptoms until, finally, she underwent a hysterectomy and bladder repair. Her relief was tremendous.
What causes these tumors in women? Why do about 25 percent of those with fibroid tumors have these symptoms? And what causes black women to have three times the number of tumors than whites? Those are among the questions that Cynthia Morton, Ph.D., and her colleagues at Harvard Medical School are trying to answer through a research effort that focuses on women and their sisters who exhibit these health problems.
"We are looking for variants in genes that may increase the chance to develop uterine fibroids," says Dr. Morton, Director of Cytogenetics in the Department of Pathology at Brigham and Women's Hospital. "We do this by recruiting sisters who have — or have had — fibroids. We need about 500 sister pairs and their relatives so that we can look at their DNA to see if there is a risk for a woman to develop tumors."
Got Fibroids?
Volunteers Wanted: Sisters Who Have (Or Have Had) Fibroids
The Center for Uterine Fibroids at Brigham and Women's Hospital is seeking participants for a study to identify the causes of uterine fibroid tumors. We are looking for families in which two sisters have (or have had) uterine fibroids. The study involves filling out two surveys and giving a blood sample, all of which can be done by mail at no cost to you. For more information, call the Center at 1-800-722-5520 (ask operator for 525-4434), e-mail us at fibroids@rics.bwh.harvard.edu, or visit our Web site: www.fibroids.net. You may also write to us at Center for Uterine Fibroids, 77 Avenue Louis Pasteur, NRB 160, Boston, MA 02115.
Currently 379 sister pairs have so far filled out the two surveys and given a blood sample to be a part of this "sister study." Dr. Morton and her colleagues are hoping that others will volunteer, as well, so that their study can help end the needless pain and suffering that many times goes along with the tumors. They also hope to find ways to reduce the symptoms of fibroid tumors that are less invasive than hysterectomy.
"My advice to other women with uterine fibroids," says Susan, who took part in the sister study, "is to listen to your body and keep a record of your family history. Treat the symptoms, but more importantly, treat the cause. Explore all of your options."
"We have to spread the word about fibroid tumors," says Dr. Morton. "By participating in this study, which is free and can be done by mail, women can help speed up research that will help future generations of women avoid the problems associated with these tumors."
NIH Study Seeks to Relieve Fibroid Pain with Fewer Side Effects
Researchers at the National Institutes of Health's National Institute of Child Health and Human Development (NICHD) are evaluating a new treatment for women suffering from uterine fibroids: an experimental drug that blocks progesterone, a female sex hormone secreted by the ovaries. Because fibroids grow in response to progesterone, therapies that lower progesterone levels could cause fibroids to shrink. That could help relieve pain and other symptoms and possibly improve fertility in women with fibroids.
Currently there is only one effective hormone-reducing therapy available for relieving fibroid symptoms, but it has serious side effects. It works by blocking the master reproductive hormone, gonadotropin releasing hormone (GnRH). Blocking GnRH not only shuts down the body's production of progesterone. It also shuts down production of estrogen, another sex hormone. Since abruptly depriving the body of estrogen causes hot flashes and prolonged estrogen deprivation can weaken bones, this treatment can only be used short-term.
The NIH researchers hope to develop a therapy that would block progesterone while leaving estrogen alone. In theory, such a treatment could shrink fibroids but spare women from hot flashes and bone weakening. Lynnette Nieman and her NIH coworkers are seeking volunteers for their study of the drug, called CDB-2914, which prevents progesterone from acting in the tissues but which does not interfere with estrogen action. The study will evaluate whether this drug causes fibroids to shrink in pre-menopausal women. Prospective volunteers must
- Be between 33 and 50 years old
- Have regular menstrual cycles
- Have a history of uterine fibroids that cause heavy bleeding, pressure, or pain.
After some preliminary medical tests, volunteers will receive either CDB-2914 or a placebo (an inactive compound) for three menstrual cycles. (Which option a woman receives is randomly assigned.) At the end of the treatment period, volunteers can choose one of several options: to receive a hysterectomy (surgery to remove the uterus) or a myomectomy (surgery where fibroids are removed but the uterus stays intact), or to receive three months of CDB-2914, regardless of whether or not they received it during the study. They can also choose to exit the study completely at that time.
To find out more about the study, call the NIH Patient Recruitment and Public Liaison Office at 1-800-411-1222. The e-mail address is prpl@mail.cc.nih.gov. Information about the study is also available from http://fibroids.nichd.nih.gov/criteria.html.