Endometriosis

Endometriosis

Stop It from Taking a Toll

Endometriosis has always made 35-year-old Allison McCormick feel older than she really is.

When she was a teen, the disease caused intense, chronic pain that made many of the activities she longed to do, such as traveling and long-distance running, off-limits. "It doesn't allow you to do the things people your age would do," she says.

In her early twenties, McCormick, a clinical research associate from Aliso Viejo, California, tried to get pregnant, but because of endometriosis, she was infertile. Then at age 25, she had a hysterectomy to stop the pain and progression of the disease. Not having a child has been the most painful issue to deal with, she says. Also, the hysterectomy thrust her into premature menopause. "Talk about aging," she says.

Having endometriosis made her "feel very different. You're having to deal with your health all the time. Other people my age didn't have to do that," McCormick says. "I missed out on a whole lot of years, a whole lot of things."

The Pain That Wears Women Out

Endometriosis is a chronic, debilitating disease affecting about five million American women of reproductive age. It's caused when tissue similar to the lining of the uterus, called endometrial tissue, grows outside the uterine cavity. This can be painful for women, because renegade tissue behaves just like normal uterine tissue--it can cause cramping, bleeding and discomfort before and during a woman's period. If it grows on the large or small intestine, it can cause pressure and pain when a woman goes to the bathroom. And if it's located in the pelvic area, it can cause discomfort during sex. For some women, the pain is mild or nonexistent. But for others, it is excruciating--what some describe as knifelike or burning.

The pain of endometriosis often wears women out, says Nancy Petersen, R.N., director of the Endometriosis Treatment Center at the St. Charles Medical Center in Bend, Oregon, leaving them with very little energy or ability to do the activities they want and need to do.

"I think they are very dragged down by the chronic, intense pain that they are dealing with. Most of them suffer substantial fatigue," says Petersen. Many women with endometriosis are "struggling, really, to live their lives. They have to really work at it," she says. And when they can't participate fully, they're often left with a sense of loneliness and isolation.

The Question of Children

For women who want children, having endometriosis can be a particularly heavy blow, because it can leave them infertile. (In fact, fertility problems can be the first clue that a woman has the disease.) Often the misplaced endometrial tissue attaches itself to the ovaries and fallopian tubes, binding them to each other and to the walls of the pelvis and making fertilization impossible, says Paula Bernstein, M.D., Ph.D., attending physician at Cedars Sinai Medical Center in Los Angeles. "Because everything is stuck to everything else, the tubes don't have the mobility to pick up the egg" and move it down to the uterus properly, she says.

If you have endometriosis, you may not know whether your fertility is affected until you try to get pregnant. And the longer you wait, the more time the disease has to progress. So many women who have endometriosis often find themselves trying to conceive sooner than they'd prefer. "There's a lot of anxiety about it," says Deborah A. Metzger, M.D., Ph.D., director of the Endometriosis and Pelvic Pain Center at the University of Connecticut Health Center in Farmington. "Dealing with the anxiety can be difficult. Women often feel that their options are limited."

What Your Doctor Can Do

Doctors diagnose endometriosis through a surgical procedure called laparoscopy. It's the only way to know for sure whether you have the disease.

The procedure involves inserting a laparoscope, a lighted metal tube that has some magnification, through the belly button and into the pelvic cavity, where doctors look for the telltale signs of the disease. Doctors can also use the same procedure to remove out-of-place endometrial tissue.

Surgery isn't the only option for treating endometriosis, although it is very effective for many women. Other options include treatment with medications such as danazol (Danocrine) or GnRH agonists, a class of synthetic drugs that are almost identical to the natural brain hormone gonadotropin-releasing hormone, or GnRH. Both danazol and the GnRH agonists prevent ovulation and menstruation. They decrease the pain of endometriosis by stopping menstrual flow.

But they do have their downsides.

Danazol has a host of side effects. "The ones that women generally find most difficult to deal with are weight gain, some mood changes and often muscle cramps, as well as some hot flashes and a little bit of acne or oily skin. Those are the most common complaints," says G. David Adamson, M.D., clinical associate professor at Stanford University School of Medicine in California and director of the Fertility and Reproductive Health Institute of Northern California in Palo Alto.

The thing that's most disturbing to women, says Dr. Adamson, is the weight gain. Women usually gain between 8 and 12 pounds while on danazol, he says. Most of that goes away when a woman stops taking the drug, but she may retain an extra 2 to 3 pounds even after she comes off it.

Danazol can also change a woman's cholesterol profile in ways that may not be beneficial to the heart, says Dr. Adamson. LDL (low-density lipoprotein) cholesterol, the bad kind, tends to go up. "Intuitively, that doesn't seem to be favorable, and potentially, it could be harmful," Dr. Adamson says. But there are no data that say taking danazol will increase the chance of heart disease. "That connection has not been made," he says.

The GnRH agonists also have aging effects. "GnRH agonists create a menopausal state," says Dr. Adamson. The menopause is temporary and reversible, lasting only as long as the woman is taking the agonists, but it can be difficult nevertheless. The major side effect is hot flashes, says Dr. Adamson, and they tend to be more severe with GnRH agonists than with danazol. In one study, 90 percent of women taking the GnRH agonist called nafarelin (Synarel) had hot flashes, compared with 68 percent of women taking danazol. In order to counteract the hot flashes, women are often given another drug, a form of progestin called norethindrone (such as Nor-Q.D.), Dr. Adamson says.

Women taking GnRH agonists are often more irritable and have more headaches than usual. For the headache-prone, that could be a double whammy: You may likely get even more when taking GnRH agonists, says Dr. Adamson.

And as if that weren't enough, GnRH agonists can also cause bone loss, which is why doctors won't prescribe them for women at risk for osteoporosis. Women tend to lose between 6 and 8 percent of their bone mass while on these drugs, which is why GnRH agonists are only a short-term solution for endometriosis. They shouldn't be taken for more than six months, says Dr. Adamson. Once the drugs are stopped, most women regain their bone in 12 to 18 months. If you have normal bone density when you start taking these drugs, they shouldn't put you in any jeopardy for bone problems later on, Dr. Adamson says. But if you've already started to lose bone as a result of osteoporosis, too little calcium or some other bone problem, GnRH agonists may not be an option for you.

Hysterectomy: The Controversial "Cure"

By far, the most controversial treatment for endometriosis is hysterectomy. It halts the disease because the uterus, where the disease starts and grows, is removed. Sometimes the ovaries are taken as well, putting a woman in a state of premature menopause.

Endometriosis is the second most common reason hysterectomies are performed on women between the ages of 25 and 44. (For women 25 to 34, heavy bleeding and obstetric complications collectively rank first, and for women 35 to 44, fibroids are the number-one reason.) In 1992, about 335,000 hysterectomies were performed on women under 45.

When it comes to aging, nothing can bring it on more abruptly than a hysterectomy in which the ovaries are removed. For younger women, having the uterus and ovaries removed puts an end to their ability to have children. They also experience the common symptoms women go through at menopause--hot flashes, mood swings, weight gain. And although hormone replacement therapy can help alleviate these problems, women still have to deal with the physical and emotional impact of change of life years or even decades too soon.

The aging factor is only part of the reason why hysterectomy is so controversial as a treatment for endometriosis. In some cases, the pain that the surgery is supposed to alleviate may not go away, or it may come back. Approximately 8 percent of women still experience pain after the operation, says Dr. Adamson. For women who opt to keep their ovaries, estrogen can continue to stimulate the disease, causing pain. Endometrial tissue is sometimes found on other organs, such as the bowel, leaving some of the disease in the body when the uterus is removed. Also, the low levels of estrogen still in the body after a total hysterectomy may be enough to stimulate remaining endometrial tissue into painful action--meaning that hysterectomy is no sure cure.

For many women with serious symptoms, Dr. Adamson reports, surgery brings welcome relief. Others regret the decision. So it's not something to be taken lightly. "Every woman needs to explore the issues before surgery," he says.

What You Can Do

There is no way to prevent endometriosis. But if you do have it, there are steps you can take to keep pain and fatigue from wearing you down.

Learn to accept. "Accepting it and talking about it as a chronic disease is really important," says Dr. Metzger. A lot of times, women go from doctor to doctor expecting magical cures, she says. Then when their pain comes back, they are disillusioned.

"I tell them 'Look, this is a chronic disease,' " Dr. Metzger says. " 'I will not be able to cure it. I'm going to help you, though, in dealing with it, and we can significantly reduce your pain.' " When women hear that, they often realize that they are hearing the truth about their disease, and they understand that they can and need to take some control over it, she says.

It's important to acknowledge that you have endometriosis and to realize that it's a chronic disease, agrees McCormick. "For a long time, I would not accept the fact that I had a chronic illness. Until you accept it, you can't deal with it," she says. Once you do that, experiment with some coping techniques that give you some sense of control over endometriosis, she advises. "Put some power back in your hands." Things that work for her, she says, are exercise and hot baths.

Turn up the heat. Applying a heat pack or hot water bottle, or taking a hot bath, can help relieve the pain of endometriosis, says McCormick. The cramping pain women feel is caused by contractions of the endometrial tissue, and heat can help break the spasm-pain cycle.

Get some exercise. Many women find that exercising helps control and relieve their pain. This works, experts say, because exercise releases endorphins, the body's natural painkillers. McCormick says that while running causes her too much pain, lifting weights and riding a bike provide relief. Walking for at least 20 minutes a day can also help, experts say. There's no prescription, doctors say, so find out what works for you.

Try medication. Over-the-counter medications that contain ibuprofen may provide relief for women with mild forms of the disease, says Dr. Bernstein. Ibuprofen works against substances in your body, called prostaglandins, that contribute to menstrual cramping. If nonprescription medication isn't sufficient, you can ask your doctor for a prescription drug such as naproxen (Anaprox), ibuprofen (Motrin), piroxicam (Feldene) or mefenamic acid (Ponstel). All these contain nonsteroidal anti-inflammatory agents that provide pain relief by inhibiting the synthesis of prostaglandins.

Try the Pill. Many women achieve pain relief by taking low-dose oral contraceptives, says Dr. Bernstein. The Pill relieves some of the discomfort of menstrual cramping by decreasing menstrual flow. Ask your doctor about it.

Stretch it out and de-stress. Yoga is an alternative for women whose endometriosis is so severe that aerobic exercise is out of the question, says Petersen. It helps improve muscle tone and flexibility as well as decrease stress, she says. Look for books and classes that can help you get started.

Watch your diet. Cutting down on the amount of refined sugar and caffeine in your diet will keep your blood sugar from fluctuating wildly and keep you calmer, so you'll be better able to cope with your pain, says Dr. Metzger.

Focus on intimacy. If your disease makes intercourse painful at certain times, remember that there are other ways to be intimate, experts say. Focus on touching, hugging, kissing and oral sex, suggests one woman with the disease. And remember that while one position may hurt for intercourse, another may not, so try to experiment and explore different possibilities with your partner.

Try acupuncture. Some women find that acupuncture helps them cope with endometriosis, says Dr. Metzger. The ancient technique involves inserting needles into points in the skin that are associated with pain relief. For information about recommended acupuncturists in your area, contact the American Association of Acupuncture and Oriental Medicine, 4101 Lake Boone Trail, Suite 201, Raleigh, NC 27607.

Seek support. Women with endometriosis often find that it helps to talk to other women who have the disease. For more information about the disease and support groups, contact the Endometriosis Association by writing to 8585 North 76th Place, Milwaukee, WI 53223, or calling 1-800-992-3636. If there are no support groups near you, McCormick suggests starting your own.