What Causes Fibroids?
Asking questions about fibroids is a lot easier than getting answers. They’re the most common tumor of the female reproductive system: It’s estimated that 75 percent of all women have them. But doctors simply don’t know why fibroids develop in the first place or why they recur, nor do physicians agree on what the best treatment is.
These hard knots of muscle fiber and collagen grow within the walls of the uterus, sometimes protruding from it or even growing on stalks outside the womb. (See "Fibroid Types and Symptoms" on page 4.) Fibroids can range in size from the head of a pin to a grapefruit. Not all fibroids are troublesome, but when they are, the symptoms they can cause — heavy bleeding, an abnormally enlarged abdomen, pressure in the pelvic area, urinary incontinence and/or frequency, pain during sex, constipation, bloating, or sciatica (because of fibroids pressing on the bowel or a nerve) — depend on their size and location.
Risk factors for the tumors run the gamut from genes to body weight. "Research is showing that at least some fibroids arise from a genetic susceptibility," says Elizabeth A. Stewart, MD, director, Center for Uterine Fibroids at Brigham and Women’s Hospital, in Boston. "Having a first-degree relative with the condition increases your risk." But so do a host of other factors: excess weight, elevated blood pressure, alcohol intake, not having children, stress, excess exposure to estrogens in the environment — and just getting older. Race plays a role: African-American women are about three times more likely to get fibroids than Caucasians are.
Hormones are yet another factor. "Estrogen makes fibroids grow, which could explain why they tend to act up with the irregular hormonal surges in perimenopause, then shrink and become asymptomatic after menopause," says Wendy Wilcox, MD, assistant professor of ob-gyn at Montefiore Medical Center, in New York. "Conversely, progesterone may shrink them."
To diagnose fibroids, your gynecologist will do a pelvic exam to feel for masses in the uterine wall. The next step may be a pelvic ultrasound. Occasionally, she may also use a hysteroscope, a thin telescope inserted through the cervix, or MRI scans to reveal the number and location of fibroids.
Because fibroids are rarely malignant or fatal, they have not been considered an urgent health problem. Until about 10 years ago, there was no major funding for fibroid research. Hysterectomy — removal of the uterus — was the primary treatment. But in the past five years, new, minimally invasive surgical treatments have become available, and doctors now predict that fibroids will eventually be treatable without surgery. "I fully expect that the number of women who need fibroid procedures in the future will drop considerably, just as it has for men with prostate problems, who now take drugs such as Proscar, which shrinks the gland," says Richard S. Guido, MD, associate professor of ob-gyn at Magee-Women’s Hospital, in Pittsburgh. Drugs that reduce the production or action of estrogen and progesterone are being tested in clinical trials. Also under consideration are drugs that target collagen, the fibrous tissue that is a major component of fibroids.
Until drug treatments become available (at least a year or two more), you have to choose a treatment based on the size, number, and location of the fibroids, the invasiveness of the treatment, recovery time, and what your insurer will pay for. One treatment may not be the end of it, however, because fibroids can recur, either because old ones were not adequately treated or because new ones form. But as the six women profiled here prove, you can find relief.
Removing the Uterus & Blocking Circulation
The Fix: Removing the uterus
The Deciding Factor: "I needed to be able to work without discomfort."
The Woman: Deni Hodges, 52
Sixteen years ago, Hodges — a yoga instructor who planned to have children soon — chose to treat her fibroids with the least-invasive option at the time, a myomectomy, in which individual fibroids are surgically removed and the uterus sewn back up. In the months leading up to the surgery, injections of Lupron shrank the fibroids and also gave Hodges menopausal symptoms (in her case, hot flashes and a loss of bone density), which persisted long afterward. But her surgeon could not remove all the fibroids — "which infuriated me," she recalls — and scar tissue from the surgery landed her in the hospital a second time with a bowel obstruction, a rare but serious complication.
Ten years after her myomectomy, Hodges was again contending with fibroid symptoms. Her distended abdomen made her look four months pregnant, and a fibroid was pressing on her sciatic nerve, causing shooting pains. This time she opted for a hysterectomy. "I was too old to have kids, and back pain for a yoga instructor is a big problem," Hodges says. "This seemed like the most reasonable and definitive alternative."
Hysterectomy remains the best choice for some women, especially those who have very large fibroids or those who continually have new growths and who don’t plan on having more children. Ten months after her hysterectomy, Hodges has a much smaller abdomen and no pain.
The Fix: Blocking local blood circulation
The Deciding Factor: "I wanted to avoid abdominal surgery."
The Woman: Micaela Englander, 49
Englander, a market researcher, was another veteran of fibroid treatments. She chose to have a myomectomy the first time she was diagnosed. Eighteen years later, after she had had two kids, symptoms returned in the form of urinary frequency and a protruding abdomen.
In her consultations with doctors, Englander kept hearing of a new procedure: uterine artery embolization (UAE), also known as uterine fibroid embolization, which would reduce the size of her fibroids by half. "That sounded good," she says. "Although the procedure was supposed to be somewhat painful, I figured it was nothing compared with abdominal surgery or a C-section, which I’d already had."
The idea behind UAE is to starve the fibroids by blocking their blood supply. With the patient mildly sedated, an interventional radiologist — the only type of physician trained to do this procedure — inserts a catheter into a blood vessel in the groin through a tiny incision. The eventual target is the arteries that supply blood to the uterus. There, tiny particles (usually clear acrylic microspheres or small bits of polyvinyl alcohol foam) are released into the arteries and smaller blood vessels that feed the fibroids. The particles clump together and block the blood flow; eventually, the fibroids shrink.
During and after UAE, some fibroid tissue dies, resulting in pain similar to severe menstrual cramps. It is usually treated with anti-inflammatory medicine and narcotics. Patients generally stay overnight in the hospital. Some women have pain for a week; a few may be uncomfortable longer.
Englander’s pain wasn’t bad. She was back at the gym within five days, no longer bothered by the pressure she had felt in certain positions. A follow-up MRI six months later showed that her largest fibroid had shrunk 50 percent and the size of her uterus had decreased by 75 percent. Her symptoms gradually decreased. "It’s probably not a good procedure for someone who wants a quick fix," she says.
UAE is most often recommended for women who have large fibroids or heavy bleeding and who don’t have the goal of becoming pregnant. Symptoms usually decrease, but the results are not always permanent. One complication is ovarian failure due to lack of blood supply. "That pushes you into menopause," notes James D. Spies, MD, of Georgetown University, in Washington, D.C. The most common aftereffect, occurring in three to seven percent of cases, is the expulsion of fibroids from the uterus. This may involve bleeding or infection, or even require a D&C to completely remove the tissue. UAE is offered at several hundred centers in the United States.
Sound Waves & Low-Energy Current
The Fix: Destroying fibroids with sound waves
The Deciding Factor: "I wanted a noninvasive treatment that my insurance would cover."
The Woman: Keri Breit, 43
Breit, a meeting planner, first noticed symptoms four or five years ago. Her periods had become very long and heavy, her abdomen looked swollen, and she became anemic. An ultrasound exam showed a fibroid the size of a small grapefruit. "In my line of work, I often have to be on-site from early morning to late at night," she says. "Running to the bathroom every hour or so was not only getting in the way, it was also embarrassing." Breit considered UAE, but there were insurance issues. Her interventional radiologist suggested MRI-guided focused ultrasound, which is also minimally invasive, has a quick recovery time and entails much less pain than UAE does.
MRI-guided ultrasound uses sound waves, which produce heat, to get rid of fibroids. You lie facedown inside the MRI machine while high-energy ultrasound waves are focused on a specific fibroid, destroying all or part of it. It takes more than one burst of energy to destroy a fibroid, and the treatment may take several hours, during which time you’re slightly sedated but conscious so you can communicate with the doctors. There’s very little pain, and the few adverse reactions have included minor skin burns and nerve injuries.
More than 1,200 women have undergone this treatment, which appears to work best for those who have one or two moderate-size fibroids. Breit’s radiologist told her that her large fibroid size was a possible problem, but that the location of the tumor was advantageous for ultrasound. Her procedure lasted four hours. She hit the emergency call button a couple of times because of pain shooting down her leg; the doctors readjusted the focus of the ultrasound and gave her more pain medication through an IV line. Afterward she was tired — she took a couple of days off — but otherwise had almost no side effects. Her radiologist told her they had been able to treat 80 percent of the fibroid and that this one, at least, would not grow back. Now Breit is down to two or three heavy days during her period instead of five. Because she’s still having symptoms and a follow-up exam showed that the original fibroid is still there, her ob-gyn recently put her on progesterone for 10 days a month to lessen her bleeding. She is also taking iron to guard against anemia and has lost 10 pounds. Her abdomen has also flattened.
MRI-guided ultrasound is FDA-approved and is offered at about 20 centers across the country. It may cost up to $20,000, and approval by your insurance company is mandatory. For more information and a listing of treatment sites, call 866-392-2528.
The Fix: Eliminating fibroids with low-energy current
The Deciding Factor: "I wanted a short recovery time."
The Woman: Lori Geiger, 49
When Geiger’s ob-gyn first diagnosed her with fibroids, she recommended a hysterectomy. Geiger hadn’t been planning to have more children (she has twins), and removing her uterus would eliminate her complaints of heavy bleeding and cramping. "I would bleed through the thick overnight pads at work," recalls Geiger, an accountant, "and I took four or five Advils every couple of hours." But she rejected surgery. "I wanted to keep my original body parts."
In 2002, as her symptoms intensified, she consulted a new gynecologist, Bruce B. Lee, MD, director of gynecologic surgery at the Monterey Peninsula Surgical Center, in California. He told her about a procedure called Halt, which he had developed and said was especially good at removing large and very small fibroids. (Since 1999, Lee has treated about 1,100 fibroids in hundreds of patients.)
At first Geiger refused it because she was afraid of the general anesthesia. But two years later, her situation had worsened; her bleeding was interfering with her training for a half Ironman triathlon. "The swim portion was in the ocean, and I was warned that sharks might be attracted to the bleeding," she says. She did complete the race, and doing so gave her the confidence to handle the anesthesia.
The outpatient procedure is done laparoscopically, using a special needle that is inserted through the skin and guided into each fibroid with the aid of ultrasound imaging. "Heat is generated in a predictable and controlled area, destroying the fibroid but leaving the surrounding tissue intact," Lee says. You’re left with two small abdominal incisions and one or two small needle punctures. After the surgery, you may need to take pain medication for a day or two to ease uterine cramps and/or pain from the incisions. Geiger scheduled her surgery on a Friday; she was back at work the following Tuesday.
Three months after Geiger’s procedure, her periods were normal, her uterus had shrunk by 60 percent, and she had no more pain. She’s training for her next triathlon, and, she says, "I can now wear tight pants without covering up the waistband. It’s the best thing I’ve ever done. I’m sorry I didn’t do it sooner."
Her only other regret: Insurance covered only the cost of the laparoscopy. Although the FDA has approved the technique, known as radiofrequency ablation, for treatment of soft-tissue tumors (which fibroids technically are), it’s considered investigational and thus is not currently fully covered. The total cost may be as much as $10,000; the out-of-pocket cost for insured patients is $5,000 to $7,000. Lee is now enrolling patients in a clinical trial, which is scheduled to begin in mid-2007, and says that full FDA approval will have to wait for the results. Lee notes that the first patient who attempted to get pregnant after the Halt procedure was able to conceive three months later and went on to deliver a healthy full-term baby.
Fibroid Surgery & Removing the Uterine Lining
The Fix: Removing individual fibroids surgically
The Deciding Factor: "Cost was a concern."
The Woman: Lisa Deeds, 45
When she was 41, Deeds, a massage therapist, went to a nurse practitioner at Planned Parenthood for an exam. The diagnosis: a grapefruit-size fibroid. Since Deeds wasn’t experiencing much heavy bleeding at the time, she decided to forgo immediate treatment and went online to research her options. She was accepted into a clinical trial of MRI-guided ultrasound. But after several hours of lying on her stomach inside the MRI tube, her back began to hurt, and she bailed on the procedure. Six months later, during a follow-up exam, she learned that the fibroid had grown.
By that time, Deeds’s periods had lengthened to nine days, she had to urinate every two hours, her back ached, she had numbness in one leg (from a fibroid pressing on the sciatic nerve), and she couldn’t sleep. "I needed my life back," she says. She chose a myomectomy, a procedure her insurance covered. During surgery, her ob-gyn discovered that one fibroid had grown to the size of a cantaloupe. While her doctor warned her that she would likely have fibroids again in five to seven years, she will probably be symptom-free until her hormone levels change dramatically. Deeds recovered quickly — she felt better after two weeks, rather than the estimated six. "I’m hoping to make it to menopause, when the fibroids will shrink," she says. She’s glad to have kept her uterus: "My mother went into a deep depression after her hysterectomy. I didn’t want that to happen to me."
The Fix: Removing the uterine lining
The Deciding Factor: "I was almost hemorrhaging."
The Woman: Ilene Silver, 53
For Silver, an insurance adjuster, her symptoms — very heavy bleeding and anemia with dizzy spells — were a problem for at least a year before she felt forced to do something. Her gynecologist had suggested that she consider UAE and MRI-guided ultrasound; she had reluctantly made an appointment to discuss the MRI procedure. But one day, Silver started bleeding uncontrollably. Her doctor told her that she was as close to hemorrhaging as he had ever seen. She ended up having an emergency endometrial ablation — removal of the lining of the uterus — under general anesthesia. During the procedure, which is done through the vagina, her doctor shaved off small fibroids he could see, but he could not remove a large one.
Endometrial ablation is often done when the main problem is severe, heavy bleeding. Various techniques are used to permanently destroy or remove the inner lining of the uterus (the source of the bleeding) as well as certain small fibroids. In general, it’s quicker and simpler than other procedures because it requires less surgery. But since the uterine lining is disrupted, it’s not a method for women who may want to get pregnant.
After an endometrial ablation, a woman may have mild cramping as well as some vaginal discharge because the lining is still being sloughed off. Silver has no regrets. She has erratic periods, but her heavy bleeding has disappeared. Her abdomen is a bit enlarged, though "I may be the only one who notices," she says.
Fibroid Types and Symptoms
Subserosal: Fibroids that develop under the outside covering of the uterus; may also be connected to the uterus by a stalk (pedunculated).
Symptoms: Pelvic pain; back pain; a feeling of pelvic pressure; sharp pain, caused by twisting of the stalk.
Intramural: The most common type, these develop within the wall and expand inward, increasing the size of the uterus so you look pregnant. Many do not cause symptoms until they become very large.
Symptoms: Heavier bleeding with periods; pelvic pain; back pain; a feeling of pelvic pressure.
Submucosal: The least common fibroid, these occur just under the lining of the uterus.
Symptoms: Bleeding between periods; heavy period bleeding and gushing.
Want to Help Cure Fibroids?
The Finding Genes for Fibroids study, at Brigham and Women’s Hospital, in Boston, is an international research study aimed at identifying the causes of these tumors. While not a treatment study, it may one day lead to more effective therapies. You can participate if you and one of your sisters have (or have had) uterine fibroids. While 350 pairs of sisters have already completed the study requirements, a total of 500 are needed.
If you enroll, you’ll need to complete two surveys, as well as supply medical records of your fibroid diagnosis and treatment. You will also need to give a one-time blood sample. (You’ll receive a kit containing instructions on how to get blood drawn, a collection vial, and a prepaid overnight mail package. Reimbursement forms and instructions are also included; you’ll be able to do the sampling at no cost.) For more information or to enroll in the study, contact the Center for Uterine Fibroids at 800-722-5520 (ask for 525-4434) or e-mail firstname.lastname@example.org.
Originally published in MORE magazine, December 2006/January 2007.