For years, pain has crept through your days like a cat burglar, stealing time, peace of mind, and happiness. Many days, your lower back hurts for no apparent reason. Bowel movements and intercourse are painful. For the first day or two of your period, intense cramping keeps you doubled into a ball on your bed.
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Your gynecologist has named this insidious intruder endometriosis. Endometrial tissue, which is supposed to line the inside of the uterus and be shed each month with the menstrual cycle, is growing outside your uterus on your ovaries, around your fallopian tubes, or across the ligaments that support your uterus. Where it lands, it weaves weblike scars as it anchors itself in your internal tissues. Then, like normal endometrial tissue, it swells and bleeds during menstruation, leaving a discharge that can't exit the body and that can cause inflammation and scarring.
Your doctor is probably trying one of several different medical approaches to controlling your endometriosis. In the meantime, there are some things you can do to help yourself and ease the discomfort.
Share your pain. Call your local women's center and find a support group, says Mary Lou Ballweg, co-founder of the international Endometriosis Association with headquarters in Milwaukee, Wisconsin. She founded the association when she needed help with endometriosis.
"Sometimes it helps just to hear you aren't all alone, knowing that other people are going through the same thing," says Mary Sinn, R.N., WomanCare coordinator at Gnaden Huetten Hospital in Lehighton, Pennsylvania. "It's an information source, too. Not everything works for everyone, but there will be ideas to try. Some women will say, 'I tried that pain reliever and it really worked for me.' "
"You will have to work on building knowledge of your disease," says Ballweg. "If you rely solely on your physician, you won't do as well. Women who look for solutions for themselves seem to do the best."
Women with fertility problems caused by endometriosis may find additional help from infertility support groups, adds Sinn.
Keep a calendar. Chart your cycle. Note when your symptoms are worse and when they are barely noticeable. Observe your diet and activity. Then consider how what you eat and how much you exercise affects your cycle, says Kay Evans, a Littleton, Colorado, psychotherapist who has endometriosis. You'll be able to take charge of some of your symptoms by avoiding things that cause pain and by seeing what makes you feel your best.
Block the prostaglandin. One of the reasons for cramping, especially at the time of your period, is that your body produces too much prostaglandin, a hormone in the uterine lining. It overstimulates your uterine muscles, forcing them to work overtime. And, like any muscle that works too hard, they cramp. Aspirin, an anti-inflammatory drug, may relieve cramps, but the best over-the-counter pain relievers are anti-prostaglandins such as Advil, Medipren, or Nuprin. Take two tablets at a time, says Camran Nezhat, M.D., an Atlanta, Georgia, gynecologist and fertility expert who is an adviser to the Endometriosis Association.
Eat more fish. Add a natural antiprostaglandin to your diet with fish, advises Dr. Nezhat. Fish contains omega-3 fatty acids, which suppresses prostaglandin production.
Add some heat. Some of the old-time remedies for menstrual cramping and low back pain will bring relief to women with endometriosis, says Sinn. Try bed rest, moist heat, or a heating pad and warm drinks to relax the cramping muscles in your abdomen.
Try a cold pack. If warmth doesn't work, you may be one of the women who finds more relief from cold than heat, Sinn adds. Place the ice pack on your lower abdominal area.
Exercise for relief. Exercise reduces estrogen levels, which may slow the growth of endometriosis. Exercise also increases the body's production of endorphins, natural pain-blocking substances. Try gentle exercise such as walking, because jarring exercise can pull on adhesions and scar tissue.
Nancy Fletcher, who was diagnosed as having endometriosis in 1980 and is the support program and development coordinator for the Endometriosis Association, walks 2 miles a day and runs about 4 miles three times a week. She finds that exercise, along with a positive outlook on life, has an impact on alleviating her symptoms.
Cut your caffeine. Caffeine, in soda, tea, or coffee, seems to aggravate the pain in some women, according to Dr. Nezhat. He advises women to avoid caffeine.
Stay carefree. Keeping the menstrual flow free and unobstructed may help prevent endometriosis, says Dr. Nezhat. Tampons may contribute to menstrual cramping by plugging the vagina like a cork. Use napkins instead of tampons, especially if you have a narrow vagina or small vaginal opening.
Take a new position. Women with endometriosis may also have a tipped uterus and often find intercourse painful, Dr. Nezhat says. During intercourse, the man's penis pushes against the uterus, which bumps nerves. The solution is to try new positions, he says. One he suggests, which allows for penetration without pain, places the man on his knees behind the woman, who positions herself on her hands and knees.
Use a natural lubricant. Extra lubrication may be necessary to ease painful intercourse, Dr. Nezhat says. And women who are having a hard time getting pregnant, a frequent problem in endometriosis, should use egg whites instead of petroleum jelly. "Petroleum jelly could kill the sperm," he says, "but the egg whites won't. The whites may encourage the sperm to race toward the ovum."
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Call for help. For self-help information, or help in finding a knowledgeable doctor or a support group, call the Endometriosis Association. In the United States, call 1-800-992-3636. In Canada, 1-800-426-2363.
Press when it hurts. Acupressure relieves pain without drugs. That's important to Susan Anderson, president of the Los Angeles, California, chapter of the Endometriosis Association. When pain begins, there are two spots she presses for relief.
One spot is located on the inside of your leg, about 2 inches above your ankle bone. You'll have found the right spot if it feels a little tender, Anderson says. The other pressure point is at the base where the bones of your thumb and your index finger meet. Press as hard as possible.
Susan Anderson, is president of the Los Angeles, California, chapter of the Endometriosis Association.
Mary Lou Ballweg is co-founder of the Endometriosis Association, a self-help organization in Milwaukee, Wisconsin. She is the author of Overcoming Endometriosis.
Kay Evans is a psychotherapist in Littleton, Colorado. She has endometriosis and is a former officer in the San Diego, California, chapter of the Endometriosis Association.
Nancy Fletcher is the support program and development coordinator for the Endometriosis Association. She was diagnosed as having endometriosis in 1980.
Camran Nezhat, M.D., is a gynecologist and fertility expert in Atlanta, Georgia, and the director of the Fertility and Endocrinology Center there. He has been an adviser to the Endometriosis Association since 1985.
Mary Sinn, R.N., is coordinator of the WomanCare unit at Gnaden Huetten Hospital in Lehighton, Pennsylvania.