Fibroids: Women Seek Answers, Treatment

Crisis, The, Jul/Aug 2006 by Adeboyejo, Betsy

Since the late 1990s, Loveda Ford has suffered with uterine fibroids. For her, the suffering is not so much from the pain associated with the often non-cancerous tumors that form within a woman's uterine lining, but from not having answers to so many questions about the condition.

"It's frustrating," says 40-year-old Ford. "No one really knows why they're there or what they are capable of. It's all a guessing game."

Last year, Ford had a myomectomy - surgery that removes the lumpy muscle cell formations on the wall of the uterus while leaving the uterus intact. She decided to have the procedure after her physician told her that fibroids could contribute to infertility and that removing them would increase the likelihood of her chances of being able to get pregnant.

Ford, who lives in Henderson, Nev., says she only did so after consulting several physicians, conducting her own research on the Internet and polling other women.

Estella Parrott, an obstetrician-gynecologist who is program director of the Reproductive Medicine Gynecology Program at the National Institute of Child Health and Human Development, says patients should talk with their medical team and try to make the best possible decision for their own circumstances.

"When someone is in a lot of discomfort and pain, they want to consider all options open to them. Whether or not to have surgery is a very personal decision."

According to research at the National Institutes of Health (NIH), about 77 percent of women in the United States could be affected by fibroids. African American women are three to five times more likely to develop fibroids than White women.

Some of the common symptoms include heavy periods, bleeding between periods, pelvic pain and reproductive problems.

Traditionally, a hysterectomy (removal of the uterus) was the primary way to treat fibroids, and it remains the only permanent cure. But for women of child-bearing age who wish to conceive, it is not a favorable option. Now measures such as pain medication, hormone treatments, myomectomy, other less-invasive methods and developing treatments are being explored as options.

Ford says she does not believe enough attention is being paid to the issue of fibroids. And she is not alone. "Almost every woman I asked either had them or knew someone who did. I was surprised," says Ford.

There are currently two bills in Congress that may attract attention and funding to the issue. Last year. Sen. Barbara A. Mikulski (D-Md.) and Rep. Stephanie Tubbs Jones (D-Ohio) introduced identical legislation which seeks to double federal funding for uterine fibroid research from $15 million to $30 million. The bills (S.1289 and H.R. 3034) would allow the NIH to expand its research on the topic.

Tubbs Jones became familiar with the issue after a former staffer's friend was suffering with a severe fibroid condition. "He told me I needed to do something about it, so we started doing some research," says Tubbs Jones.

"Uterine fibroids constitute a significant public health concern and remain an important priority for women's health research at NIH," says Parrott. "While uterine fibroids represent the most common gynecologic tumor in women, the mechanisms that initiate fibroid growth and pathogenesis (the origin and development of a disease) are not completely understood. Most likely, fibroids are the end result of many factors interacting with each other. These factors could be genetic, hormonal, environmental, or a combination of all three."

Ultimately, scientists at NIH hope their research will lead to a better cure than a hysterectomy and eventually to finding a way to prevent fibroids from growing. To date, there is no known cause of fibroids, nor is it known what increases or decreases the risk for fibroids.

The bills would provide $30 million for uterine fibroid research each year for five years. The legislation would also require the Centers for Disease Control and Prevention to educate healthcare providers about uterine fibroids and require them to set up a public education campaign for patients. Both bills are languishing in congressional committees.

"I've learned that legislation doesn't happen quickly, but I'm determined to get this work done," Tubbs Jones says.

As for Ford, she hopes somebody will have some real answers soon. "First I was told if they don't bother you, you don't bother them, but if they become a problem, I should have them removed. Then I was told they may affect my chances of getting pregnant and having children. Now that I've had them removed, I understand there is a chance that they could come back. Why? No one knows. It's just been a process of elimination. I'm like, 'I'm 40, I'm running out of time, people.'"

Betsy Adeboyejo is a freelance writer based in the Washington, D.C. area.