Teresa Menz, a 34-year-old teacher from Sidney, N.Y., tried almost everything for her fibroids — benign uterine tumors that cause pain and bleeding in millions of women.
With more than 100 fibroids, Menz’s belly was as big as that of a woman 26 weeks pregnant and she hemorrhaged during every menstrual period. She tried hormone treatment for a year and had four major operations. Nothing worked.
Until last fall, when she became one of a few hundred women worldwide — and the first at North Shore Medical Center in Salem — to undergo a procedure called uterine artery embolization. Her fibroids are still growing and the treatment may have left her infertile. But at least her periods are normal now.
For years, Leslie Magier, 36, a Framingham interior decorator with a hereditary bleeding disorder called von Willebrand disease, also had such heavy periods she “couldn’t walk into someone’s house because of the fear I would bleed onto their couch,” she says.
Magier, too, took a chance on a then-experimental treatment — uterine balloon therapy — two years ago at Brigham and Women’s Hospital. She’s has been fine since, the balloon device was approved by the US Food and Drug Administration in December and the procedure is becoming available at many hospitals.
As many as one-fifth of women are believed to have excessive menstrual bleeding — bleeding that lasts more than seven days or necessitates more than 10 pads a day. But until recently, both women and their doctors often ignored it.
In fact, many women never mention it, either because they’ve gotten used to becoming shut-ins every month or because they fear they’ll be told to have a hysterctomy.
In the past, those fears were often justified. Hysterectomies — done 600,000 times a year — are the second-most common operation, after Caesarean sections. And many hysterectomies — 25 percent, according to a 1993 Rand study; more than 90 percent, say some women’s advocates — may be unnecessary.
But a growing recognition of bleeding problems in women and new treatment options may soon change this mindset, starting with a research conference this weekend in Philadelphia.
The first step in treating excessive menstrual bleeding, specialists say, is to figure out exactly what’s causing it.
Often, the cause is a hormonal disturbance in which the ovary does not release an egg, which triggers irregular bleeding — light one month, heavy the next, says Dr. Brian Walsh, chief of surgical gynecology at the Brigham.
Other times, it’s fibroids, which affect one-third of women and can cause heavy bleeding during and between periods.
Occasionally, it’s that the lining of the uterus (the endometrium) grows into the uterine wall. And sometimes, as in Magier’s case, the cause is von Willebrand disease, a genetic defect that’s less well-known, but more common than hemophilia.
Von Willebrand disease affects at least 3 million men and women — versus 20,000 (mostly men) for hemophilia, according to figures from the Centers for Disease Control and Prevention to be presented at this weekend’s conference.
And while both men and women with von Willebrand have severe nosebleeds and bruise easily, women have an extra problem — heavy menstrual periods, says Dr. Jeanne Lusher, a Wayne State University hematologist and co-organizer of the conference, which is being sponsored by the National Hemophilia Foundation.
Once the cause of heavy bleeding is identified, the next step is to choose among the growing treatment possibilities.
If the problem is hormonal disturbance, for instance, the solution is hormonal — birth control pills to regulate periods if you’re young and don’t smoke, progesterone pills for two weeks a month if you’re older or smoke.
If the problem is von Willebrand disease, injections — or a relatively new nasal spray — of DDAVP (1-deamino-8-D-arginine-vasopressin) often help, as do transfusions in some cases.
Surgery, of course, is the right solution for some women, but that doesn’t have to mean a traditional hysterectomy, which takes four to six weeks to recover from. Today, many hysterectomies can be done vaginally and recovery takes two to four weeks. Some women also take a hormone called Depo-Lupron before surgery to shrink the uterus to allow vaginal removal.
Another alternative is ablation, or destruction, of the lining of the uterus. This is a deeper procedure than a D & C (dilation and curettage), which removes only the surface of the lining and reduces excessive bleeding for only a few cycles.
Ablation, which usually stops excessive bleeding or at least makes it lighter, is often done with a “rollerball,” a kind of electrified paint brush passed repeatedly over the endometrium.
“If you don’t want a hysterectomy and want normal bleeding,” this may be an answer, says Dr. Alan Penzias, a gynecologist at Beth Israel Deaconess Medical Center.
But the fluid (glycine) used to inflate the uterus during this procedure can cause electrolyte imblances, warns Dr. John Petrozza , a reproductive endocrinologist at the New England Medical Center. Ablation is also likely to cause infertility.
And because the rollerball demands considerable skill, some surgeons are now turning to a new, easier technique that utilizes a balloon device made by Gynecare, Inc.
In this procedure, which Magier had, a balloon is inserted into the uterus and filled with water that is then heated to 188 degrees Farenheit for eight minutes.
So far, more than 125 women have had balloon therapy, says Walsh of the Brigham, who ran part of the study that led to FDA approval of the device. It takes 28 minutes, he says, versus 45 for the rollerball, and can be done under local anesthesia plus intravenous sedation.
Like any ablation technique, though, balloon therapy “destroys the endometrium by scarring it,” warns Nora Coffey , director of the HERS (Hysterectomy Educational Resources and Services) Foundation in Pennsylvania.
And because ablation is chiefly for women whose bleeding is not caused by fibroids, those who have fibroids must consider other options, like Depo-Lupron to temporarily shrink fibroids.
If surgery does seem to be the best solution for fibroids, there’s still an option to hysterectomy. Called myomectomy, it involves removing just the fibroids that protrude into the uterus, not the uterus itself. This can preserve fertility.
If the fibroids are big or numerous, the myomectomy must be done through an abdominal incision. But if they’re small or few in number, they can be removed with an instrument called a hysteroscope that is inserted vaginally. Some researchers are experimenting with freezing and thawing to remove fibroids.
The option Terera Menz chose — embolization — is still another option for fibroids. So far, it’s still rare, but “very exciting,” says Dr. Robert Mals, the interventional radiologist at North Shore Medical Center who treated her, with gynecologist Mitchell Rein.
In the procedure, a catheter is inserted into the groin and threaded up to the uterine arteries under X-ray guidance. When it reaches the blood vessels supplying the uterus, tiny particles of polyvinyl alcohol are released. This triggers a kind of heart attack in the uterus; the resulting blockage of blood flow then causes the fibroids to shrivel.
Dr. Robert L. Worthington-Kirsch, an interventional radiologist in Bala Cynwyd, Pa., who has done 186 such embolizations, says that while fibroids shrink, the uterus itself survives because of collateral blood flow. Even so, the procedure should be assumed to cause infertility.
The procedure, long used to treat hemorrhaging after childbirth, is 90 percent successful for fibroids, he says, in that women get at least some reduction in bleeding. But so far, there are few published reports and many are skeptical, including Coffey of the HERS Foundation.
“I don’t think embolization is conservative,” she says. “We are still doing these destructive things to women in the name of its being an alternative, it not being a hysterectomy.”
But Teresa Menz doesn’t see it that way at all. “I would totally recommend this over hysterectomy to women who definitely are done having children.”
SIDEBAR:
Where to learn more
Talk to your doctor about a possible bleeding disorder and tests for von Willebrand disease if:
- Your menstrual periods get progressively heavier or longer or last more than seven days, you need more than 10 pads a day or more than a super-tampon an hour, or if you pass large clots.
- You bleed heavily after surgery, including dental work.
- You have a family history of heavy bleeding.
- You get nosebleeds that demand emergency treatment.
- You bruise easily.
If you have excessive menstrual bleeding, ask about:
- Tests for anemia, and iron supplements.
- A drug called DDAVP if you have von Willebrand disease.
- Hormonal treatment, including birth control pills, to restore menstrual regularity.
- Ultrasound and other tests to see if you have fibroids. If you do, consider medications, including GnRH agonists like Depo-Lupron (a monthly injection), Synarel (a daily nasal spray) and Zoladex, capsules injected under the skin. The drugs are expensive — $300 a month or more — and bring on menopausal symptoms such as hot flashes, vaginal dryness, and bone loss.
If your doctor suggests a hysterectomy, ask about other options:
- If you choose to have your uterus removed, ask if this can be done vaginally, which can shorten recovery time.
- If the problem is fibroids, ask about a myomectomy — surgery to remove fibroids, not the uterus. This can be done vaginally or through an abdominal incision. You might also ask about uterine artery embolization.
- If bleeding is not due to fibroids, ask about endometrial ablation, including the new balloon therapy device.
- Get a second opinion or call a women’s health group such as the HERS Foundation, 610-667-7757, for more information.