If I were a betting gyrl, I’d wager that you or someone you know has fibroids. I’d even up the stakes a bit and venture that most of the women you know have fibroids. Actually, before I go all in, let me be a bit more specific. Odds are most of the black women you know have fibroids.
The National Institutes of Health estimates that 13 million women in the U.S. have these noncancerous tumors, and black women are three times more likely to develop them. Fibroids occur when tissue grows within, and sometimes outside of, the walls of the uterus. Little is known about how to prevent them or why they happen in the first place. Doctors believe they’re linked to a diet high in fat, which may increase estrogen levels in women. But because they’re not life threatening and affect a very specific segment of the population, they’re low on the medical research totem pole. Less than one percent of fibroid cases become cancerous, but they’re usually accompanied by some seriously disturbing symptoms.
Take Iris, a family friend who lives in New Jersey. She found out she had fibroids 20 years ago after suffering excruciating stomachaches. She’s had two surgeries, including a myomectomy to remove the fibroid tumors, but each time they returned. At one point, she told me, her fibroids caused her to look five months pregnant. A few years ago, while shopping for a bathing suit to wear on a cruise, “a sales woman suggested I look in the maternity section,” Iris said. She did.
My cousin Calida suffered painful cramping and had to be hospitalized as a result of her fibroids. Doctors told her that her uterus was so scarred, it would be nearly impossible for her to conceive. Fortunately, that wasn’t the case. I could go on about Melissa in Philadelphia; Sharon in Washington, D.C.; Mary in New York; Sonya in Virginia; myself; and so many others.
Fibroids have become so common that I was challenged to find a woman who didn’t have them. And for such a rampant condition, the options for treatment are laughable at best. Doctors generally suggest doing nothing at all or undergoing a hysterectomy. The logic here is that if women can ride it out without treatment, menopause will do the job naturally. Without all that extra estrogen, fibroids will almost always shrink on their own. A hysterectomy, obviously, will prevent them from returning in more extreme cases.
The drug Lupron, which is used to treat prostate cancer, is known to shrink fibroids, but it induces a temporary state of menopause—and costs $500 a shot—so it’s used sparingly. More recently, there has been success with uterine fibroid embolization, a fairly new treatment that cuts off the blood supply to the fibroid tissue, but it’s still considered experimental so most insurance companies won’t cover it. What were the odds?
The problem with the lack of treatment options is starting to surface as women developing fibroids are becoming younger and younger. They want to have children, and they don’t want to spend a lifetime in discomfort or pain. “I used to treat a lot of women 30 and older,” says Dr. Beverly London, a gyn in Jacksonville, Fla., who performs the embolization procedure. “I’m seeing it in a lot of younger women.”
Dr. London said she’s also starting to treat more white women. And that might be the factor that tips the scales. New figures estimate that 40 percent of all women over the age of 35 will develop fibroids. Until fairly recently, fibroids had been categorized as a black women’s issue or a lifestyle choice—labels that result in a very serious condition becoming racialized. When that happens, research and funding are limited. You know how the rest plays out. “Money is always the holdup,” Dr. London reminds us.
But with the number of fibroid cases among white women increasing that may soon change. Initially, I thought that was pretty disgraceful, that advances in fibroid treatments, which could help so many black women, would only occur as more white women started being affected. Now, I’ve changed my mind. I think it’s time for women, regardless of race, to share resources and information to bring about better treatment options for all of us. In the end, it’s about women’s health, period. Together, I’m certain that we can expel the alien within.
Thanks for this, Lady. I, too, have been diagnosed with fibroids and been given the standard “no big deal if they’re not bothering you” speech by several gyns. I’m sooo not comfortable with that.
Although it’s unfortunate that the diagnoses are on the rise, we can all remain hopeful that it might translate into $$$.
Peace
Thanks for this post – I don’t have fibroids but many of girlfriends have or had them. The surgery is intense and provides no guarantee that the fibroids won’t return. And I recently heard that there is an increase in breast fibroids.
You are correct – we must know our bodies and be our own best advocates!
I witnessed my mother with fibroids and she was in her mid 30′s at the time. She too looked about five months pregant and had to have a very invasive surgery. I am at that age now and am due to visit my gyno. Fingers crossed.
These numbers are alarming and I am looking forward to better studies being done to spare our black women this mystery and discomfort.
thanks again!
Thanks Chana. As you know, I ran the gamut with my fibroids — massive bleeding, excruciating cramping, Lupron injections, myomectomy and finally, a hysterectomy — all in my 30s and 40s. You write beautifully. If anyone can get folks to pay more attention to this problem, you can.
CG, I’m a fibroid survivor. Yes, years go those small round tumors that can grow like grapes on a vine, made me miserable. My period seemed to always be more on than off (the bleeding ruined many outfits and sometimes put me in embarrassing circumstances when in public). Also, the cramps kept me bed ridden a day or two. My Doctor then was Lodema Stephens, a wonderful GYN who was always sensitive to the needs of her patients (she would even warm the tongs while you were up there on the table and your legs were straddled in those stirrups! And, no shoving of that silver pliers, she’d gently insert up the vaginal track while talking about things so that you’d relax)
Anyway, Dr. Stephens believed in preserving as much of you as possible so she performed a myomectomy. I was in my early 40s then, but she figured I still had lots of years left to make another baby, so a hysterectomy was out of the question. I left out of the hospital with a beautiful bikini cut, according to Dr. Stephens, “No need for ugly scars.”
If anyone is capable of loving a doctor, I surely loved her. I nearly cried when she gave up her NY practice. Her plan was to move to Boston to do research and possibly start a practice there. So, she hubby and the five kids left and I don’t think she ever looked back. I’ve never since then have known a doctor like Lodema Stephens, MD.
A good doctor mean everything!–NB
Dr. Stephens was my mom. She was a wonderful doctor, and a loving, amazing person. Thanks for saying such kind words about her. I miss her dearly. She passed away in 2007 from colon cancer.
Dr. Steph/dedi’s mom (and leah’s mom of course!) was, for all intents and purposes, my mother in law and I miss her terribly. You are right about her being an amazing doc and always putting her patient’s first. I had for years, wanted to be pregnant- to have the experience and she let me observe her delivering a baby. A craftswoman par excellence and your story offers another demonstration of the impact such a woman can have.
Hey Chana! As you pointed out, I know several women including myself with fibroids. In fact, my cousin is having surgery to remove two this week. They definitely effect my cramps and period flow. I’ve ruined many pants and bedsheets because the bleeding at time is uncontrollable. It frightens me that doctors don’t really seem to know what to do about them. My said they were too small to do anything and just to ride it out until they got big enough to warrant removal. But I really want to have children and I’m hoping that they don’t get so bad, so fast that they ruin my chance of that. Brava on another well done blog!!
Chana,
I want to give you an update to my situation. Even though I live at Whole Foods and take all kind of herbs and eat about a 75% raw food diet and even juice daily I still decided to participate in an experimental drug study.My fibroids or my uterus has shrunk from a 25cmx19cm to 20cmx15cm. I was so excited. I contribute that to the study drug as well as to my new eating style. I am going to keep you posted on what happens now since the study is over. The doctors expect the fibroids to gro w back but let’s see, hopefully I have found the answer with the herbs that I am taking to to reduce and process estrogen better thru my system. I had my first period since coming off the study and thank God no clots! I am sure those are the herbs and the food change. Anyway I have babbled enough for now and will follow up after my next ultrasound.
Hello Chana,
Thanks for this. I’m having the UFE procedure on April 24, 2009 and I’m feeling a bit apprehensive about it. I pretty much have a high tolerance for pain, so I’m not really worried about that. I am worried about BLOOD CLOTS. I’ve seen/heard blood clots kill so many people. I also know a handful of folks who were saved by arriving at the ER just in the nick of time, one of which was my nephew. A friend of mine said to me last night (she’s a nurse) that fear is natural, but that I need to follow my heart and if my heart says no procedure…then don’t do it.
Thoughts?
Hi Chana,
To the comment above: Let me clear up my comment on “blood clotting” mine were during my period, which seems to be the norm for woman that have fibroids. Also, my sister and a cousin were one of those persons that was rushed to the hospital and made it there in the nick of time. It was basically because their blood count was so very low. I take a liquid iron supplement floridax – Iron+ herbs. It was recommended to me by Dr. Sunyatta – the belly dancing lady on the Michael Baisden show. I was in her belly dancing class about two years ago….lots of women in her class had fibroids.
Thanks for the post! I’m currently sitting here in pain (just took two advils) and my stomach is so bloated. Also, my periods are extremelly heavy (I’m sure you all know what I’m talking about). I’m 28 years old and found out 5 months ago about the fibroids. Haven’t had kids yet, and I’m a little concerned. Im considering the surgery thru the belly button, which my doctor remcommended. Any Comments????
Thanks!
Thanks for this great post Im pretty sure that many people are searching informative post like yours .
To Johanny,
they will usually grow back, even with surgery. if you want the surgery do it but change your eating life style to organic and whole/raw foods as much as you can. you are young enough i think that you could consider some other options. i do recommend an iron supplement called floridax, it’s a liquid all natural you can get in whole foods and most health food stores. i am not in the health profession, i have hust been with this for almost 20 years and finally pray that i am on the right track.
iris
Hi ladies. I work every day with women who are suffering with fibroids. UFE (Uterine Fibroid Embolization) has been done safely and effectively for over 15 years in the US and is a great non-surgical treatment. The most common response from patients after this procedure is “I am FREE” because they truly are free from the burdon of fibroids and have their lives back- AND they keep their uterus!