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Susan Urquhart, a Christmas tree farmer near Ann Arbor, Michigan, was 54 and going through perimenopause. Her periods were unusually heavy and, for the first time in her life, she was experiencing mood swings and had difficulty sleeping. Because she also had fibroids, benign tumors that her gynecologist believed now made her uterus the size of a five-month pregnancy, the doctor urged her to have a hysterectomy, saying it would relieve her symptoms. But when an ultrasound showed that her fibroids were nowhere near that big, Urquhart refused to have the operation.
Three months later, still seeking relief, she went back to her gynecologist. The doctor explained that hormone therapy wasn't an option -- fibroids appear to grow in the presence of estrogen -- and was adamant that a hysterectomy was the only solution. No other alternatives were even mentioned. Urquhart reluctantly agreed.
"Because of my age, the doctor said she was going to remove my ovaries as well as my uterus. She said it was standard procedure," says Urquhart, who objected, worried that losing her ovaries, which make most of the body's estrogen, would result in hot flashes and make her other symptoms worse. Her doctor countered that "she could replace what my ovaries were producing with drugs."
Expecting relief after the surgery -- which did include removal of her ovaries -- Urquhart instead slammed into severe instant menopause. Even twice the usual hormone dose didn't quell her hot flashes, night sweats, and other symptoms. At her six-week post-op visit, Urquhart asked, "What happened to me?" She says the doctor laughed and replied, "It's menopause. You'd have been like this in a year anyway."
But it was her post-surgery sex life that really sent Urquhart into an emotional tailspin. "I had always been orgasmic," she says. Without a uterus, intense uterine orgasms were a thing of the past. "If sex was a 10 before," she says, "it's now a two to three at best. This is a huge loss."
Urquhart is hardly the first woman to be pressured into having a hysterectomy without a full and frank discussion of the risks and alternatives. More women have hysterectomies than any other type of surgery except Cesarean section, and an astonishing 90 percent of hysterectomies are done for benign conditions such as uterine fibroids, abnormal bleeding, endometriosis, and pelvic pain, all of which can often be treated with less-drastic remedies. Moreover, more than half of these operations are performed on women under age 44, according to the Centers for Disease Control and Prevention. "Are we doing too many hysterectomies in this country?" asks William Parker, MD, chair of obstetrics and gynecology at Saint John's Health Center, in Santa Monica, California, and coauthor of A Gynecologist's Second Opinion. "There's no question about it."
The primary reason that some gynecologists aren't telling women about hysterectomy alternatives is because they're not trained in new, less-invasive therapies, Dr. Parker admits. "Doctors may not want to tell their patients, 'This procedure is available but I don't know how to do it, so I'm going to send you down the street to my competitor.'" The other reason doctors are quick to recommend this surgery is cancer prevention. "It's drilled into us in our training," says Lauri Romanzi, MD, clinical associate professor of gynecology at New York-Presbyterian Hospital/Weill Cornell Medical Center. "After 40 -- when preserving childbearing is no longer the goal -- taking out the uterus, cervix, and ovaries prevents gynecological cancers, including ovarian cancer, which is relatively rare but very aggressive and deadly. Preventing cancer is a noble goal, but the fact is, hysterectomy's not the only solution out there now. And we also need to start thinking about lifetime survival rates and quality-of-life issues such as sexual functioning."
The chilling reality is that even patients who do need a hysterectomy have options that could lessen the procedure's impact on the body, such as saving one or both ovaries (which may ease or prevent premature menopause). And depending on the type of tumor and its location, there's even a less-extensive surgery for early-stage uterine cancer that preserves fertility.
The best a woman can do right now is to become educated. When hysterectomy is recommended to treat a benign condition, the decision should be made only after consulting more than one gynecologist -- and not under duress. "When you don't have cancer, you have all the time in the world," says Barbara Levy, MD, medical director of the Women's Health and Breast Center at the Franciscan Health System, in Federal Way, Washington. And if the doctor does find cancer, your next step should be to consult a gynecologic oncologist about the most-advanced, least-invasive treatments for your particular situation (see www.wcn.org, the Web site of the Women's Cancer Network, for names near you). Use the following pages to explore your choices.
WHAT THEY ARE: Benign tumors that grow in the uterine wall just outside the uterus or between its muscles. Fibroids are the reason for approximately one-third of all hysterectomies. Often women aren't even aware they have fibroids until they're discovered during a routine gynecologic exam.
HOW DANGEROUS ARE THEY? Because these growths typically don't become cancerous, they can simply be checked once a year by ultrasound, unless symptoms become problematic enough to require treatment. At menopause fibroids generally shrink and symptoms stop. But before that they can cause heavy bleeding, painful periods, pelvic pressure, frequent urination (if the fibroid is pressing on the bladder), pain during sex, or lower back pain. "One-third of the women I see for second opinions for fibroids need no surgery but have been told by their doctors they need a hysterectomy," says Dr. Parker.
WHAT TO TRY: Before you have a hysterectomy, see if the following will solve your fibroid problems:
Progestin. Taken as a pill, an injection every three months, or via the Mirena IUD, this hormone controls fibroid-caused heavy bleeding by decreasing the thickening of the uterine lining each month. (The fibroids do not shrink, however.) Expect spotting for the first few months, but after three to six months bleeding usually becomes regular or stops altogether. In studies of Mirena, for instance, bleeding was reduced by 90 percent after a year.
Uterine fibroid embolization. This procedure blocks arteries that supply blood to the fibroids, slowing their growth and, eventually, shrinking them. If the arteries reopen -- or new ones form -- fibroids can regrow.
In-office techniques to reduce fibroids. Doctors use an electrical current (myolysis), a freezing probe (cryomyolysis), or MRI-guided ultrasound with lasers to destroy or shrink the tumors.
Surgery. A procedure called myomectomy removes the fibroids completely but leaves the uterus in place. If the fibroids are small or outside the uterus, the procedure may even be done on an out-patient basis. Large, inaccessible or multiple fibroids inside the uterus may require an abdominal incision and a two-to-three day hospital stay, plus up to a six-week recovery, similar to hysterectomy. Some fibroids can be removed through the vagina, significantly reducing recovery time.
WHAT IT IS: About 7 million women between 35 and 55 in the United States suffer from this condition (medical term: menorrhagia), often because of a hormonal imbalance. Have a thyroid check first, though: Low thyroid hormone levels can cause abnormal bleeding, as well.
HOW DANGEROUS IS IT? The main problem to watch for is anemia, which can eventually lead to shortness of breath, weakness, and fatigue.
WHAT TO TRY: Progestin therapy may do the trick. If it doesn't, and a woman is not planning on having children, the next approach should be endometrial ablation, which destroys the lining of the uterus, preventing the possibility of pregnancy but also ending bleeding. Since 1997 the FDA has approved five devices, which use either a thermal balloon, sub-zero temperatures, radio frequency, heated saline solution, or microwave energy. Many procedures can be performed in an outpatient hospital setting or in the doctor's office, and the patient usually returns to her normal activities within two days. Because these devices are expensive, most gynecology practices invest in only one (hospitals sometimes offer all five), but "there's nothing to suggest one is better than the other," says Gavin Jacobson, MD, residency program director in obstetrics and gynecology at Kaiser Permanente Medical Center, in San Francisco. Afterward, about 40 percent of women stop having periods altogether, 85 to 90 percent have decreased bleeding, and about 10 to 15 percent require additional treatment, such as a hysterectomy.
WHAT IT IS: A condition in which the type of tissue lining the inside of your uterus (endometrium) also grows outside the uterus on your ovaries, fallopian tubes, or on other pelvic or abdominal organs.
HOW DANGEROUS IS IT? Depending on the extent of the growth, the condition can cause lesions, scar tissue, considerable pain, and infertility (if its location blocks eggs from reaching the fallopian tubes).
WHAT TO TRY: Pain medication as common as ibuprofen (or stronger prescription options) and, if needed:
Oral contraceptives containing estrogen and progestin, which stop ovulation and decrease monthly bleeding, including bleeding of endometrial tissue outside the uterus.
Progestin only (as a daily pill or as an injection every three months), to stop ovulation and decrease endometrial tissue bleeding both in and outside the uterus.
Danazol, a drug that stops the release of the sex hormones that cause menstruation. Result? Endometrial tissue -- both inside and outside the uterus -- doesn't bleed, relieving pain. Danazol shouldn't be taken in combination with other hormones such as birth control pills.
Gonadotropin releasing hormone (GnRH) agonists, (as a nasal spray, implanted device, or periodic injection), which put the body in a menopausal state, stopping tissue from bleeding. But these shouldn't be used for more than six months owing to the risk of bone thinning.
Laparoscopic surgery to destroy the lesions and cauterize or laser blood vessels. This requires only a few stitches and leaves little or no scar tissue.
WHAT IT IS: Severe pain in the area between the belly button and hips that has lasted at least six months and isn't always related to the menstrual cycle. It affects 15 to 20 percent of women between ages 18 and 50. Causes include endometriosis, enlarged veins, STDs, infection, irritable bowel, and emotional issues.
HOW DANGEROUS IS IT? It is related to higher rates of depression and sexual dysfunction.
WHAT TO TRY: Depending on cause, options include antibiotics, antidepressants, over-the-counter painkillers, progestins, GnRH agonists, oral contraceptives, physical therapy, psychotherapy, surgery, trigger point injections, nerve separation/ablation (removal of nerve tissue or injection into the nerve tissue, not of nerve tissue) or destruction of nerve tissue. "People who experience pain on a daily or almost-daily basis should be evaluated by an expert in pain -- in addition to a gynecologist," says Dr. Levy. "Surgery may not relieve pelvic pain."
WHAT IT IS: When the pelvic organs, including the uterus, bladder, rectum, urethra, and bowel, fall toward the vagina. The condition is most often seen in women in their early 40s and older who have had children. Pregnancy and childbirth can stretch or damage the ligaments that hold these organs in place, and estrogen, which helps maintain the pelvic muscles and tissues, declines as we age.
HOW DANGEROUS IS IT? The uterus or bladder may protrude outside the vagina or the front wall of the rectum may bulge into the vagina. This can be very uncomfortable and may cause rectal pain or bleeding, chronic constipation, bladder infections, pain during intercourse, or difficulty urinating or emptying the rectum. Women may also leak urine when they cough, sneeze, or run.
WHAT TO TRY: A vaginal pessary, a plastic or rubber ring inserted into the vagina to support the weakened muscles or tissues, or surgery to restore the muscles or tissues that hold the pelvic organs in place. This can be done vaginally, with a laparoscope; there's no large abdominal scar, less pain after surgery, and a faster recovery compared with abdominal surgery.
If you have cancer or another condition that makes hysterectomy look like the best option, try to get a second -- or even third -- opinion before surgery. Here are the issues you need to settle:
SHOULD MY OVARIES STAY? In more than half of hysterectomies performed for benign conditions, the surgeon removes a woman's healthy ovaries to protect against the possibility of ovarian cancer, but views on the necessity of this are changing dramatically. "When I was trained 25 years ago," says Dr. Parker, "taking out the ovaries was a matter of course." The rule of thumb was, for women over age 50, ovaries come out; under 40 they stay in; and when in doubt 45 is a good cutoff point, he explains.
Whatever your age, don't agree to lose your healthy ovaries without discussing your risk of ovarian cancer -- a dangerous but rare disease (there are more than 22,000 new cases a year, compared with more than 178,000 for breast cancer). "We don't spend a lot of time assuring women that their chances of having ovarian cancer are astronomically small," says Dr. Levy. "It's easier to suck a woman into surgery she doesn't need by making her afraid she's got something bad."
Here's why keeping your ovaries matters: In 2005 Dr. Parker reported that women whose ovaries were removed during hysterectomy had a greater chance not only of developing heart disease but also of dying from it. "Ovarian cancer kills 14,000 women a year," he says. "It's a terrible disease, but you've got to balance that against the fact that 450,000 women die from heart disease." If you're at high risk for ovarian cancer, removing ovaries makes sense; if not, think twice.
CAN MY CERVIX STAY? The cervix contains nerve endings that are stimulated during intercourse. Some women who have had it removed complain that sex is no longer the same. Recent research doesn't support their feelings, however. Two randomized, controlled clinical trials -- one from the United Kingdom, the other in the United States -- found that retaining the cervix does not make a difference. The latter study reported that after hysterectomy women who'd either retained or lost their cervix had similar levels of sexual satisfaction in the quality as well as the frequency of their orgasms. "A woman who wants to retain her cervix because she heard it might be better for her sex life should recognize this claim isn't supported by the rigorous studies that have been done on this question," says Miriam Kupperman, PhD, professor of obstetrics, gynecology, and epidemiology at the University of California, San Francisco School of Medicine, and the American study's lead researcher.
WHICH TYPE OF OPERATION SHOULD I HAVE? Once you've confirmed what the surgeon will do, you need to discuss how. Abdominal surgery gives doctors the most access to the body but leaves the largest scar and has the longest recovery period. If abdominal surgery is recommended, it's worth asking about other options.
"Minimally invasive hysterectomy -- laparoscopic or vaginal -- should be a good option for the vast majority of women with benign disease because it's much less traumatic for the body," says Dr. Levy. "Yet that's not what happens -- 60 to 65 percent are still being done abdominally. That's too high." If your surgeon is not trained in these techniques, find another.
Once you've made all your decisions, be sure the plan is clearly stated on the consent forms you sign before surgery. "A standard form can be altered by crossing out or adding what is to be done, with changes initialed by doctor and patient," suggests Dr. Parker, who uses a handwritten form that specifies the exact procedure, its risks, and alternatives.
Women get heart disease later than men because estrogen protects them. After menopause ovaries no longer make much estrogen but still produce testosterone and androstenedione, which are converted to estrone, a less-potent estrogen. "This is less estrogen than before, but enough to produce some protection against heart disease," says Dr. Parker. Research on 684 women from the Rancho Bernardo Study, which has followed 6,000 residents of this California town for 35 years, found testosterone levels may rise with advancing age in those who still had their uterus and ovaries. This may protect against heart disease. In contrast, women whose ovaries were removed had 40 to 50 percent lower levels of testosterone, says lead study author Gail Laughlin, PhD, of the University of California, San Diego School of Medicine, in La Jolla. Data suggest women with lower testosterone levels are at increased risk for coronary heart disease and earlier heart disease death. Thus, doctors should reconsider removal of healthy ovaries.
After her first pregnancy, April Ward, now 42, developed an embarrassing problem that only grew worse after she had two more children. "The muscles inside my vagina had separated and allowed my uterus and part of my bowel to balloon into my vagina," says the full-time New York City mom. She also had bladder problems: Every time she sneezed, urine leaked. The usual treatment for her condition, pelvic organ prolapse, is hysterectomy, and indeed 10 to 15 percent of hysterectomies are done every year for this reason. But Ward was adamantly opposed. "I didn't want to lose part of my body just to make life more convenient."
Eventually she found Dr. Romanzi, a urogynecologist specializing in prolapse reconstruction. In 2007 Dr. Romanzi spent three and a half hours reattaching Ward's ligaments and correcting her bladder problems. "This surgery put everything back where it needed to be," says Ward. "I'm so happy I want to spread the word."
Originally published in Ladies' Home Journal, October 2008.