The Mystery and Misery of Endometriosis

Pelvic pain, disabling cramps, extreme fatigue, painful sex, or infertility--all can warn of endometriosis.

This poorly understood disease devastates millions of women with no regard to race or income. It's a leading cause of infertility.

Cause unknown

No one's sure what causes endometriosis. Some doctors believe it occurs when menstrual fluid backs up through a woman's fallopian tubes (which move eggs from the ovaries to the womb) and falls into the pelvis behind the womb. Others blame heredity, immune disorders, or cellular changes. But it's not an infection or cancer, says Ellen E. Wilson, M.D., a reproductive endocrinologist in Dallas.

A highly vascular tissue called the endometrium lines the uterus. In endometriosis, that tissue appears outside the uterus. It can grow on the outside of the uterus, fallopian tubes, ovaries, bowels, bladder, rectum, and surgical scars, or almost anywhere on the peritoneum, the lining of the abdominal cavity. In rare cases, it turns up in the lungs.

Outside the uterus, this tissue acts just as it would inside the uterus. Each month it breaks down and bleeds as a result of hormonal signals. But, without the normal cervical/vaginal outlet, the body can't get rid of the waste. Tissue and old blood can build up, causing inflammation, swelling, and scarring.

Mary Lou Ballweg, president, executive director, and founder of the Endometriosis Association (EA), says she struggled with endometriosis for years before getting the right diagnosis. She had five operations linked to the disease.

Severe pain

Endometriosis often causes great pain. "Childbirth was a piece of cake compared with what I was used to," Ballweg says.

But the degree of pain doesn't reflect the severity of the disease. Some patients have no pain, while others with severe menstrual pain don't have the disease.

Surgery is the only sure way to diagnose the ailment, says Estella Parrott, M.D., medical officer for the National Institute of Child Health and Human Development. Doctors make a small incision and use a lighted instrument called a laparoscope to look inside the body.

Treatments include pain medicines, hormones, and surgery. Pregnancy also helps, by making lesions linked to the disease shrink and eventually heal, although they can return.

But the best treatment--and the degree of relief--varies from woman to woman.

Are you at risk?

The EA offers a self-test to help women assess their risk for the disease.

How many of these symptoms have you had for at least six months?

  • Pelvic pain. The pain may have a monthly pattern, for example being worst during your period and/or mid-cycle. Some women have constant pain.

  • Fatigue, exhaustion, low energy.

  • Diarrhea, painful bowel movements, or other stomach upset at the time of your period.

  • Stomach bloating and swelling.

  • Heavy or irregular menstrual bleeding.

Score yourself: 10 points if you said "yes" to pelvic pain; five points for each "yes" for the remaining symptoms. If your score totaled 10 points or more, you have signs of endometriosis. Talk with your doctor about a diagnosis and treatment options.

If you said "yes" to any questions, tell your doctor about your symptoms.


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