Chapter List

• Introduction to Total Health for Women
• Acne
• Alcoholism
• Allergies
• Anemia
• Angina
• Appendicitis
• Arthritis
• Asthma
• Back Pain
• Bladder Infections
• Breast Cancer
• Breast Implant Complications
• Breast Lumpiness
• Bronchitis
• Cervical Cancer
• Cesarean Section
• Chronic Fatigue
• Colds and Flu
• Cold Sores
• Colorectal Cancer
• Constipation
• Depression
• Dermatitis
• Diabetes
• Diarrhea
• Eating Disorders
• Eczema
• Endometrial Cancer
• Endometriosis
• Fatigue
• Fibroids
• Fibromyalgia
• Food Allergies
• Foot Pain
• Gallstones
• Gender Discrimination
• Gum Disease
• Hair Loss
• Headache
• Hearing Loss
• Heartburn
• Heart Disease
• Heart Palpitations
• Hemorrhoids
• Hepatitis
• High Blood Pressure
• High Cholesterol
• Hiv and Aids
• Hysterectomy
• Incontinence
• Infertility
• Inflammatory Bowel Disease
• Inhibited Sexual Desire
• Insomnia
• Irritable Bowel Syndrome
• Lactose Intolerance
• Laryngitis
• Lung Cancer
• Lupus
• Menopausal Changes
• Menstrual Problems
• Motion Sickness
• Muscle Cramps
• Neck and Shoulder Pain
• Oral Cancer
• Osteoporosis
• Ovarian Cancer
• Overweight
• Painful Intercourse
• Panic Attacks
• Pelvic Inflammatory Disease
• Phlebitis
• Physical and Emotional Abuse
• Pneumonia
• Post-Pregnancy Problems
• Post-Traumatic Stress Disorder
• Premenstrual Syndrome
• Psoriasis
• Raynauds Disease
• Repetitive Strain Injury
• Rosacea
• Sexually Transmitted Diseases
• Sinusitis
• Skin Cancer
• Smoking
• Stress
• Stroke
• Temporomandibular Disorder
• Tendinitis and Bursitis
• Thyroid Disease
• Ulcers
• Unwanted Hair
• Vaginal Infections
• Varicose Veins
• Vision Problems
• Water Retention
• Yeast Infections

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Endometriosis

Endometriosis

Strategies for Beating the Pain

Lynn Repaty's periods were so painful and heavy, she couldn't drive, she couldn't go to work, she was afraid to even leave the house. Sometimes they were so bad that she had a hard time making it to the bathroom to change her tampon. So she'd camp out, literally, on the bathroom floor.

"I couldn't stand. I couldn't walk. For many years--a good 10 to 15 years--I was debilitated three to four days a month," says the director of membership/support services for the Endometriosis Association in Milwaukee.

She remembers exactly when the pain first started--with her first period at the age of 12. She suffered incredibly heavy bleeding and severe menstrual cramps from that day on. At 17 her doctor put her on birth control pills to control the pain, but it wasn't until much later--during an infertility test at the age of 26--that she found out the cause of her discomfort all those years.

Repaty has endometriosis, a virtually incurable, often painful disease in which the endometrium (the lining of the uterus), or tissue resembling the endometrium, grows outside the uterine cavity--where it doesn't belong. Experts estimate that about 7 percent of American women of reproductive age--about five million women--are affected. Some of these women may not have any symptoms, and others may have symptoms that go unrecognized by them or their doctors. Doctors do find endometriosis in teenagers; some 50 percent of teens who undergo surgery for dysmenorrhea, or severe menstrual cramps, have been found to have it.

An Obstacle in a Woman's Life

Endometriosis brings more than just a painful period each month. The disease, especially in severe cases, may control a woman's life. It can interfere with her social plans and influence her career decisions. It can also determine if and when she'll be able to have children. Women with endometriosis plan around their calendar. "They plan around their pain," says Repaty.

For many women, the ability to make and keep social engagements depends on whether the events fall at the right time of the month. And they continually face the possibility of having to cancel activities because their pain arrives at the wrong time. Dinners out, a night at the movies, a friend's surprise party--they may avoid them all because of endometriosis.

Endometriosis costs some women their careers; they may end up choosing a job because it's something they feel they can manage, not because it's what they really want to do. Repaty wanted to be a lawyer. She scored very high on her law school entrance exams and, she says, she showed a real aptitude for the field. Yet she knew she'd have to miss class so many days due to pain, doctor's visits and multiple surgeries that completing law school was out of the question. And the rigorous demands of a lawyer's schedule would also be impossible. Instead she opted for two careers--teaching and running her own business--that would allow her the scheduling flexibility she needed.

Endometriosis can also interfere with a woman's plans to have children. While experts don't know how many women with the disease are infertile, many are unable to conceive because of the damage the disease does to their fallopian tubes and ovaries. Missing out on having children was one of the most painful things for her, says Repaty.

And women who do have the capacity to get pregnant often feel like they're in a pressure-cooker, says Miranda Johnson-Haddad, an English professor at Howard University in Washington, D.C., who has the disease. Women know that the sooner they try to get pregnant, the better, because every day they wait is another day their disease could get worse, she says. They may feel rushed to get married and start a family. Or if they're married but don't feel ready for children yet, they may find themselves in a real dilemma: Should they gamble and wait, or rush when they're not ready? Johnson-Haddad and her husband chose to take a chance and waited three years before having a child.

How Endometriosis Works

A common site for endometriosis is the pelvic cavity. Uterine tissue can also grow on the ovaries, fallopian tubes, bladder and bowel.

The disease causes pain because, just like the lining of the uterus, this out-of-place tissue bleeds when a woman has her period. So she feels cramping wherever it's located. It can also cause pressure on the organs on which it grows. If the tissue is on the floor of the pelvic cavity or on ligaments that support the uterus, the woman may have pain with intercourse. If it has attached itself to the bladder or bowel, she may experience pain during urination or bowel movements.

Some women have no pain, others a little or a lot. And there's often little correlation between the amount of pain and the extent of the disease, says Nancy Petersen, R.N., director of the Endometriosis Treatment Program at St. Charles Medical Center in Bend, Oregon. Some women with advanced disease can have few or no symptoms, and some with milder disease can have excruciating pain, which some describe as knifelike or burning, she says.

While the exact cause of endometriosis is not known, experts have several theories, including that of retrograde menstruation. The hypothesis here is that during menstruation, uterine contractions push blood back through the fallopian tubes into the pelvic cavity. Once there, the endometrial tissue implants itself and grows.

Another theory says that retrograde menstruation couldn't be the answer because endometrial cells are different from uterine tissue. Instead, endometrial cells are laid down in the pelvic cavity during fetal development. Then at adolescence, with the change in estrogen levels, the cells are stimulated and endometriosis develops. Yet another theory says that women may develop endometriosis because their immune system isn't functioning the way it should.

Who's at Risk

If a woman's mother or sister has endometriosis, she's twice as likely to have the disease, says G. David Adamson, M.D., clinical associate professor at Stanford University School of Medicine. And some studies show that when the disease runs in the family, it's usually more severe.

Women who have a cycle that is 27 days or shorter and have menstrual flow that lasts a week or longer are twice as likely to develop endometriosis as women with longer cycles and shorter flows, experts say. Women with dysmenorrhea are also at increased risk. In some studies, it has been found that women with endometriosis began menstruating at a younger age than those without the disease.

Finally, research on monkeys indicates that there may be an association between environmental factors and the development of endometriosis. In one study, monkeys exposed to radiation developed endometriosis. This does not mean that every woman with endometriosis has it because she was exposed to environmental hazards, says Dr. Adamson, but it does indicate that environmental factors may be associated with the development of the disease.

How to Know If You Have It

The symptoms--painful periods, heavy bleeding, pain at midcycle, pain on intercourse, pain while going to the bathroom and infertility--may cause you and your doctor to suspect that you have endometriosis. But the only way to know for sure is through a diagnostic procedure called laparoscopy, says Paula Bernstein, M.D., Ph.D., an attending physician at Cedars-Sinai Medical Center in Los Angeles.

During this procedure, your doctor will take a look through an instrument called a laparoscope, an optical device for viewing the inside of the body, which is inserted into the pelvic cavity through the navel. For years the telltale signs of endometriosis were black lesions called powder burns. Recently, however, red and clear lesions have been identified as endometrial tissue, so now doctors are detecting cases they would not have identified as endometriosis before.

A detection method that doesn't involve surgery is a blood test called CA-125 screening. This test measures the levels of substances that have been found to be high in the presence of endometriosis. It's problematic, though, because a high level doesn't mean you have endometriosis. A study has found that measuring the levels at two different times in the menstrual cycle--once at the beginning of the cycle before ovulation and once during menstruation--gives doctors a better indication of the possibility of disease.

Taking On Endometriosis

There are several options for treating endometriosis, but it's nearly impossible to cure.

Laparoscopy can be used to treat as well as diagnose endometriosis. Through the laparoscope, physicians can use a variety of techniques, including excision and laser vaporization, to get rid of endometrial tissue. Women may need to have the surgery done several times if their disease progresses rapidly.

Women who want to conceive have the best chance of doing so right after they've had laparoscopy, says Dr. Bernstein. "The woman's pelvis is as clean as it's ever going to be right after you've done everything you can surgically. That's her optimum window for pregnancy if she's got moderate to severe disease," she says.

There are also medications available to treat the disease. Oral contraceptives interfere with the normal menstrual cycle, resulting in lighter flow and less cramping. A steroid derivative called danazol (Danocrine), which works by suppressing ovulation and interfering with the normal cycle, has also been used. It also binds to endometriotic tissue and may prevent the cells from proliferating. While women can try danazol, the prescription drug has many possible side effects, including hot flashes, weight gain, acne and irregular vaginal bleeding, and it may cause women to develop male characteristics, such as a deeper voice and hair growth on the face and body.

A newer class of drugs called GnRH agonists, which are drugs similar to the natural brain hormone gonadotropin-releasing hormone (GnRH), affect the key hormones instrumental in the menstrual cycle and interfere with ovulation and menstruation. While women find these prescription drugs--the most commonly used are Lupron and Synarel--somewhat more tolerable in terms of side effects, they can't take them indefinitely. After about six to nine months, women are at increased risk for osteoporosis and heart disease.

Finally, women with endometriosis do have the option of hysterectomy, or removal of the uterus. Advocates say that by removing the uterus, the source of the endometrial tissue is also removed. And if the ovaries are also removed, that eliminates the woman's source of estrogen, which helps endometrial tissue grow.

But other experts argue that the uterus may not be the actual source of the disease in some cases and that because endometrial tissue is located elsewhere, removing the uterus will not cure the disease.

While some women request a hysterectomy because they can no longer tolerate the pain, experts warn that the pain of the disease may return after the procedure. "Having a hysterectomy doesn't always guarantee that someone will necessarily be 100 percent pain-free," says Dr. Bernstein. Surgery usually improves symptoms, but not always, she says.

Questions to Ask the Doctor If your doctor thinks you have endometriosis, she may recommend surgery. Here are some questions to ask. * Why are you recommending laparoscopy? * How much experience do you have with laparoscopy? * What's your experience with how patients do? * What will happen when I go for laparoscopy? * If you find I have endometriosis, are you going to remove what you can of the disease? * Do I have any other options for treatment? * What are my chances of having children? * How much surgery will I have to have? * Will it lead to hysterectomy? * If I have a hysterectomy, will I be pain-free?

Coping with Endometriosis

While endometriosis cannot be cured, there are things you can do to alleviate the pain. Here are some suggestions.

Try to get out and about. Exercise is often helpful for women with milder endometriosis, experts say, and is recommended if a woman can tolerate it. It "increases the natural endorphins . . . the natural painkillers," says Deborah A.Metzger, M.D., Ph.D., director of the Reproductive Medicine Institute of Connecticut in Hartford. Walking for 30 to 45 minutes a day can help, she says.

Yoga-size. Some women have such severe disease that aerobic exercise is out of the question, says Petersen. For these women, yoga is an alternative. "It helps their bodies to be more supple and in some cases it improves muscle tone," she says. "Overall it can decrease stress."

Eat regularly. Eating three meals a day will help maintain your blood sugar level, says Dr. Metzger. "When blood sugar gets low, there's a lack of energy, and it can make it harder to deal with pain," she says.

Watch what you eat. Cut as much caffeine and refined sugar as you can out of your diet, says Dr. Metzger. Cutting back on sugar will keep your energy levels from fluctuating and you'll be better able to deal with your pain, she says. Simple changes like eating a bran muffin made with apples instead of sugar or replacing your morning doughnut with a bagel and light cream cheese can help, she says.

"Caffeine also causes your nerves to be jittery," which can affect your ability to cope, she says. So try decaffeinated coffee and sodas.

Finally, some women find it helpful to eat bananas and drink warm milk at bedtime to help them sleep, says Petersen. Bananas and milk contain tryptophan, which is synthesized by the brain into serotonin, a neurotransmitter that can induce sleep.

Meditate and relax. Relaxing through meditation or visual imagery helps many women sleep better, reduces stress and helps women cope with the pain of their disease, says Petersen. Try tapes on visual imagery, pain relief, meditation or deep relaxation and use them to take a break during the day, she says. If you have a private office at work where you can listen to the tape during your lunch break, "think about spending 15 to 20 minutes meditating, allowing the body to sort of reset itself so that you can cope with the rest of the day," she says.

Those who can't take a break at work should find time when they first get home. They should "take 20 minutes, put their feet up, block out the rest of the world, take care of themselves and then move into whatever needs to be taken care of in the evening," says Petersen.

Talk with other women. Networking with other women through support groups is very helpful, says Repaty. "Attending support groups made me feel I wasn't alone, that I wasn't the only woman with my disease," she says. Contact the Endometriosis Association, 8585 North 76th Place, Milwaukee, WI 53223, for information on a group in your area.

Call for help. If a support group isn't your style, the Endometriosis Association can connect you with individual women with the disease. If you want to know about endometriosis and drug therapy or hysterectomy, the association can put you in touch with women who have been through it. "The best way is to get firsthand information from women. They can tell you what doctors they've been to, how they were treated, what the doctor's bedside manner was," says Repaty.

Involve your partner. Endometriosis can affect your relationship and your sex life. It's important to talk to your partner and involve him in the process, says Repaty. Take him to the doctor's office with you, and talk to him about your feelings and concerns, she says.

Take a new view of sex. Endometriosis can often cause painful intercourse if the tissue is situated in certain areas. First, realize that there are other ways to be intimate besides having intercourse, says Repaty. Second, if you have more pain at certain times in your menstrual cycle, tell your partner and plan to have sex at times that are better for you, she says. Third, explore different positions, she says. While one may hurt, another may not. If you know one position hurts, try to talk about it before the next time you have sex, she says.

Try medication. Over-the-counter and prescription medications may provide relief for women with mild forms of the disease. Look for products that contain ibuprofen, which counters the effects of prostaglandins, the chemicals responsible for menstrual cramping.

Check out the Pill. Low-dose oral contraceptives can provide pain relief, says Dr. Bernstein. Being on the Pill often lessens pain because it decreases the amount of menstrual flow; the estrogen in the Pill interferes with the release of the hormones that would normally cause the endometrium to thicken. And the synthetic progesterone in the Pill, called progestin, inhibits the development of the uterine lining. Women can also use the Pill if they've had surgery for endometriosis and their pain returns.

Try acupuncture. Acupuncture, an ancient technique used for pain relief and for the relaxation that comes with it, involves inserting needles into specific points in the skin. "Certain points are associated with relief of pain. Some women I see say it does help them," says Dr. Metzger. "I will not discount any treatment that helps women relax." Ask your doctor to refer you to an acupuncturist.

Ask a lot of questions. Endometriosis is a complex, difficult disease. Ask as many questions as you have of your doctor. If you ask questions and the answers do not fit with your experience with the disease, consider getting another opinion, says Petersen.