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The Fibroid Sisterhood

For the frustrated women in this ever-growing sorority, a check list to help you deal with the pain.

Thomas Northcut
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June 30, 2008--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.com. 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.  

Explore and implement self-health solutions. Many women have been able to shrink their fibroids or even get rid of them by changing the way they eat, adding exercise and dealing with emotional issues. This is an excellent alternative for fibroid sufferers in their 40s: Because the tumors feed on estrogen, they generally shrink with menopause. So if you can manage them yourself until then, it may be possible to avoid surgery and other medical procedures.

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, www.sirweb.org, 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, at www.uterine-fibroids.org.

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The Fibroid Sisterhood

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  • Posted By:
    redtrini at 09/03/2008 3:01:51 PM
    Comment:
    I discovered my fibroids early this year. I am planning to hav surgery nxt month. I have no children and want to but my fibroids are very large and it may affect my chances. I am 33yrs. I is very hard to go through this. I am always tired because i am now anemic and i am always waiting for a pin to drop expcting somehting to happen. Although i never had a bad diet, i have changed lots of thngs i just need th engergy to start back exercising. The bleeding and weight gain is the worst part for me. It has also affected my sexual relationship with my partner.
    Reagan
  • Posted By:
    guest911 at 07/18/2008 5:32:36 PM
    Comment:
    I'm 30, have had a fibroid for several years, but recently, after a few weeks of constant bleeding, the ultrasound revealed that it's grown to almost 9cm (the size of a grapefruit). I don't really have any symptoms from it (the bleeding has stopped completely), but both obgyns I went to see said surgery is a must. I'm not very happy with that recommendation because I don't want to go under the knife. I am not yet ready to have children but I want to be able to in the future. Has acupuncture worked for anyone to decrese the size of these beasts? Can anyone recommend a great obgyn surgically conservative surgeon in LA? Thanks.
  • Posted By:
    trini at 07/17/2008 8:09:56 PM
    Comment:
    hello twilliams 1977,
    i recently had a myomectomy to remove my three fibroids. i had one that was about 10 cm plus in diameter and one about 2 cm and the third one 3 cm. my surgery was on Friday 27th June 2008. when i was awakened after the surgery i asked if it was friday (just making sure i had the actual surgery and was not dreaming) then asked for my mom (she was outside and I knew she was anxious). i am 35, single and have no children. i am grateful to God that my doctor was able to "peel"off my fibroids without taking my uterus. the largest one was resting ritght on my uterus. prior to the surgery i had my period for a few days a month as normal, the only difference in me was the weight gain and i looked a few months pregnant. i teach in a small high school and a few students asked and were happy when i told them i was "pregnant." i am a small female and the slightest weight gain is noticeable. about 2-3 months before the surgery, my period came every 2 weeks, that scared me, but i knew the fibroids caused that. so far i am still recovering from surgery and doing fine. i discovered i have a high threshold for pain and did not use most of the pain killers prescribed, only the ibuprofin. my doctor referred me to her ob/gyn who suggested surgery. the big one was growing at a rate of 2cm a year. two ultrasounds one year apart measured the growth rate. i would advise you get a second and third and fourth opinion. i can have children, but must have a c-section. no problem because i plan on adopting. the incision was vertical from below my belly button to below the hairline. she cut along the line of hair from my belly button. it is about 4.5 to 5 inches long and was stapled shut. removing the 21 stapes were not as painful as i thought. just a slight pinching feeling. at first it was painful to laugh, cough or sneeze and i walked bent over slightly like an old lady (my mom enjoyed that sight). sneezing pins a little, i can laugh and cough pain free. most f the swelling has gone down and my stomach is looking like it did before the fibroids grew out of control. i did a lot of research before the surgery to "see" them. i am doing fine now and taking it it easy. it is now 20 days later.

    ZM
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