In some of the most respected medical manuals, fibroids are referred to as little more than a pesky annoyance. On a legitimate medical Web site they are described as, "generally symptomless, rarely causing problems and seldom requiring treatment."
But that's not the story whispered in late-night phone conversations, shared at sister circle support groups, posted on blogs or tearfully relayed to physicians in their offices—especially among black women and women over 35 among whom fibroid problems are more common.
Yes, fibroids, growths in the uterus that appear during the reproductive years, are officially classified as benign; that is, these tumors don't cause cancer. But they are far from benign when it comes to the havoc they can wreak.
In many years writing about black women's health issues, I've heard nearly every horror story. One woman, who had for years suffered from the side effects of a baseball-sized fibroid, described losing so much blood during her period, that she passed out at work. Seeing her lifeless body and bloody stains on her clothing, her co-workers thought she had died. Another told me she feared for her unborn baby's life after a sonogram showed a fibroid mashing the fetus against the wall of her uterus. Her baby was born small but healthy, but that experience convinced her not to have any more children. I interviewed a 30-something newlywed a few months after her doctor explained that she'd never have children because of dozens of fibroids embedded in the wall of her uterus. And a young writer I know called her fast-growing fibroid "that angry balled-fist of pain and regret that grew each day that I kept silent about the man who abused me when I was a little girl."
These are the stories—the horror stories—that millions of women tell. Though most of us will suffer from fibroids at some time in our lives, relatively little is known about them. Bundles of smooth muscle and connective tissue with their own blood supply, fibroid tumors live and thrive on the hormone estrogen. They can cause debilitating, life-crushing pain and disrupt fertility, but no one knows what causes them, though they tend to run in families. These days, more treatment options are available than ever before, but there is little agreement among doctors about how best to remedy the problem. Plus, even after some of the most promising and noninvasive corrective procedures, fibroids often recur. The most common remedy—after decades—is still a hysterectomy, the removal of the uterus. This confusion about what to do about fibroids sends women to the Internet frantic for information—often from the many others in the crowded fibroid "sorority. "With so little conventional wisdom, if you're diagnosed with fibroid tumors, it's on you to gather as much information as you can. Here's where to start as you create a thoughtful and sensible treatment plan that's right for you:
Learn as much as you can about fibroids. For a thorough, authoritative look at fibroids, read the book Uterine Fibroids: The Complete Guide by Elizabeth Stewart, M.D. Dr. Stewart, a professor of obstetrics and gynecology at the Mayo Clinic College of Medicine in Minnesota is one of the country's foremost experts on fibroid tumors. (Check out Dr. Stewart's recent interview on fibroids with journalist Farai Chideya on NPR. You can also read, It's a Sistah Thing: A Guide to Understanding and Dealing with Fibroids by Monique R. Brown. Though the book is a few years old, Brown's perspective is unique and informed: In her mid-20s, she was told by her doctor that her growing fibroids were no big deal and was sent home with a prescription for birth control pills to regulate her period. But her fibroids continued to grow rapidl,y and by the time she was 27 a specialist informed her that she was "headed for a hysterectomy."
Eventually Brown found a physician who was able to remove the fibroids and keep her uterus in tact. But she was so frustrated and alarmed by her experience that she researched and wrote the book.
Alternative medicine practitioners believe that unhealthy foods, stress, lack of exercise and too little rest can throw hormones out of wack and lead to both the development and growth of fibroids. They also speculate that hormones in food and toxins in the environment can trigger and fuel fibroid tumors.
For alternative methods of both preventing and treating fibroids, read the book Healing Fibroids: A Doctor's Guide to a Natural Cure by Allan Warshowsky, M.D. Dr. Warshowsky, a Bethesda, Md., board certified obstetrician/gynecologist began studying alternative medicine after realizing that nothing he learned in medical school, or later as a practicing physician, could help the vast majority of his patients who were suffering from fibroids and other problems like PMS, endometriosis and the symptoms of menopause.
Dr. Warshowsky and other alternative-medicine practitioners recommend eating a variety of foods, preferably organic, that are low in fat and high in fiber, while avoiding fried and fatty foods, processed foods, caffeine, sugar and excessive amounts of dairy products. Other lifestyle changes include getting rid of unhealthy habits. If you smoke, stop. Cut down or eliminate alcohol. Make sure you're exercising several times a week and get plenty of rest every night. And take steps to ease stress and break the silence about emotional issues you may be having trouble dealing with.
Find a treatment option that's right for you. This is tricky, and you'll have to spend time researching what's best for your particular case. Short of a hysterectomy, here's a sampling of what's out there:
Myomectomy: In this procedure, a gynecologist surgically removes fibroids, leaving the uterus in tact. Depending on the number of fibroids, where they're located and their size, they can either be taken out through an abdominal incision, through several smaller incisions using an instrument called a laparoscope or removed vaginally (no incision) using a hysterscope.
Uterine artery embolization: UAE (or sometimes called UFE). This is a newer procedure, though it has now been used by tens of thousands of women, including Condoleezza Rice. It is minimally invasive and shrinks fibroids by blocking their blood supply. It must be performed by a specialist called an interventional radiologist, not an OB/GYN. This procedure is best for women who have had children or choose not to, since it remains unclear whether embolization can interfere with future pregnancy. For more information, go to, Society of Interventional Radiology, the professional organization for interventional radiologists.
MRI Guided Focused Ultrasound Surgery: This new, noninvasive technique uses high-intensity ultrasound energy to destroy fibroid tumors. It hasn't been widely performed, so it may be difficult to find a physician who can do it. The company that created the procedure, InSightec, offers a list of treatment centers where the technique is offered.
Ask lots and lots of questions. Now is not the time to be intimidated by your physician. Or if you are, bring along a friend or family member who can speak up for you. Arm yourself with up-to-date information, and make sure you've been told about every treatment option including doing nothing, especially if you're near menopause. If you're offered any kind of hormone-based medication, including birth control pills, ask how it works to treat fibroids, how long you have to take it and what possible side effects you might face.
Physician skill and experience counts, so if you need a procedure, particularly surgery, ask your doctor how often he or she performs it. If your doc is new to the game or performs the technique only a few times a year, move on.
Don't be afraid to get a second opinion, even if you have to pay for it out of pocket. Studies show, for instance, that most gynecologists do not offer UAE among the menu of treatment choices because they aren't trained to perform it. The vast majority of women who undergo the procedure find out about it elsewhere—from a friend or the Internet. A second opinion is also critical if you've been told you need a hysterectomy. Having your uterus removed may, ultimately, be your best alternative. But make sure you've explored all your options first.
Finally, talk to other women. Fibroids run in families, so chances are high that one of your female relatives has had them. Don't be shy about discussing your own challenges and asking your friends and loved ones for support, advice, resources and referrals. It's also easy to use a search engine to find bloggers who are writing about their own experience with fibroids. It may not be a sorority you ever wanted to join. But there are plenty of sisters out there with good information and supportive advice. Don't be afraid to reach out.
Linda Villarosa is a health columnist for The Root. Passing for Black is her first novel. For more go to her Web site.