Endometriosis Painful, but Treatable

by Food and Drug Administration (FDA)

The pain was so sharp I thought I'd ruptured my appendix, but the doctor said, no, it wasn't that. It was between my periods, so I didn't connect it with menstruation. I was 16.

"Over the next 10 years, I had more and more of these 'pain attacks,' and my periods gradually became heavier and more painful.

"When I was pregnant with my first child, I was virtually pain-free. But shortly after he was born, each month around ovulation, I went to bed in tears from horrible pain. And I bled so much during menstruation I didn't dare leave the house. I went back to the doctor. It was endometriosis."

— A woman from Des Moines, Iowa

Endometriosis is a mysterious, often painful, and disabling condition in which fragments of the lining of the uterus (womb) become embedded, or implanted, elsewhere in the body.

Of the more than 3,000 patients registered with the research program of the International Endometriosis Association in Milwaukee, 41 percent report having symptoms as teenagers. About 5 million American women and girls, some as young as 11, have endometriosis, according to the association.

"These girls have terrible pain," says Lyle Breitkopf, M.D., a gynecologist in New York City. "Typically, they come to the school nurse month after month — maybe six to eight of their 12 menstrual cycles — needing something for pain or being sent home vomiting, writhing on the floor."

For the woman from Des Moines, 25 years with endometriosis led to removal of her uterus, fallopian tubes, and ovaries a number of years ago. For many women today, new medicine and less drastic surgery reduce endometriosis symptoms and preserve reproductive organs.The Food and Drug Administration has approved several drugs to treat endometriosis and regulates medical devices, such as lasers, used in surgical treatment.

A woman who thinks she may have endometriosis should be examined by a gynecologist. The sooner treatment begins, the better it is for the patients, says Breitkopf. "When we find them at an early stage, we can arrest the condition more easily and keep after it so it doesn't progress as far."

Doctors don't know why endometriosis only strikes certain women.

Some probably inherit it, says Breitkopf. "I've seen it in sisters, including identical twins, and in grandmother-mother-daughter situations."

According to Robert Badwey, M.D., a gynecologist in suburban Washington, D.C., "For whatever reason — greater incidence, better diagnostic techniques, or both — we're much more aware of endometriosis now than even a few years ago."

What's Happening in the Body?

Normally, an increased level of hormones each month triggers the release of an egg from the ovary. Finger-like tissues on one of the fallopian tubes grasp the egg, and tiny hair-like "cilia" inside the tube transport it toward the uterus. When the egg is not fertilized, the uterine lining breaks down and is shed during menstruation.

The abnormal implants of endometriosis are not in the uterus, but they respond to hormonal changes controlling menstruation. Like the uterine lining, these fragments build tissue each month, then break down and bleed. Unlike blood from the lining, however, blood from implants outside the uterus has no way to leave the body. Instead, it is absorbed by surrounding tissue, which can be painful.

As the cycle recurs month after month, the implants may get bigger. They may seed new implants and form scar tissue and adhesions (scarring that connects one organ to another). Sometimes, a collection of blood called a sac or cyst forms. If a cyst ruptures, it often causes excruciating pain.

Symptoms vary from patient to patient. Severity of symptoms frequently has little to do with the extent of the implants. For instance, some women with just a few implants have severe pain, while some with many implants have little or no pain.

For some, pain starts before or during menstruation and gets worse as the period progresses. Others report pain at a variety of times during the month. There may be a sharp pain at ovulation when the egg, trying to move into the fallopian tube, causes a cyst on the ovary to burst. (Many women normally feel a twinge of pain at ovulation. Pain caused by a ruptured endometriosis cyst is severe.)

Patients whose implants affect the bladder or intestines often report painful urination or bowel movements and, sometimes, blood in the urine or stool.

About the Author

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