A Pain You Can't Ignore: Endometriosis

What Is Endometriosis?

Last January, after a long run, I sat down to a delicious dinner of Thai takeout -- then sprinted to the bathroom three hours later. Diarrhea turned to blood, and when I thought I was well enough to stand, I actually passed out. My husband, Scott, found me a few feet from the toilet with my pants around my ankles. He was scared; I was mortified. We'd been married only six months, and this was hardly newlywed bliss.

I blamed dodgy tofu, or maybe a bad mango salad. My symptoms persisted through the night, so I called a gastroenterologist the next morning. He saw me right away and scheduled a colonoscopy. The verdict? Inflammation and impaired blood flow to the large intestine, a problem most common in men and women over the age of 60. I'm 33.

The stomach pain, nausea, and diarrhea continued for several weeks, coupled with sharp cramps and deep pain during sex. My GI doctor prescribed a common antispasm medication to calm my intestinal issues. I saw a food allergist to manage my diet and bloating, and an acupuncturist to help with the cramps. I still exercised, though not as often. I found that high-intensity Spinning, when I felt up to it, muted the pain.

After months of turmoil, my gyno performed laparoscopic surgery; this revealed that I have endometriosis, a chronic disease in which the uterus's endometrial lining begins to grow elsewhere, such as on other pelvic organs, interfering with their function and potentially damaging the bladder, intestines, and appendix. Surgery, the only sure way to confirm and correct the condition, showed that the sticky endometrial lining was binding my left ovary to my intestines and uterus, putting pressure on the organs and likely causing the intestinal problems. It had also grown on both ovaries and the area behind my uterus, which contributed to my stomach pain.

Endometriosis is a problem that more than 80 million women across the world suffer from -- with at least 10 million cases in the United States alone, according to the Endometriosis Research Center. It's one of the top three causes of infertility, is the source of an estimated 80 percent of chronic pelvic pain, and accounts for more than half of the 600,000 hysterectomies performed annually. A 2007 study calculated that costs of endometriosis care in the U.S. reached $22 billion in one year alone.

Yet because few women share details about something so personal, it's easy to feel, as I did, confused about what's happening. Here's what I learned: During a normal period, the uterus sheds its endometrial lining, and small amounts of endometrial cells pass harmlessly through the pelvic area and exit the body. But in an endometriosis patient, when these cells are shed they invade other areas of the body. They frequently implant themselves on the uterus, ovaries, fallopian tubes, bladder, appendix, and rectum, where they cause inflammation and painful scarring, and can lead to filmy adhesions that bind together organs, muscles, and ligaments. (This is different from uterine fibroids, which are benign growths on or inside the uterine walls.) In severe cases, multiple organs can become plastered together. No one knows the precise cause of the condition, though some research points to genetic links. Estrogen is known to stimulate the growth of endometrial tissue.

Because endometriosis pain most often occurs during ovulation, menstruation, urination, bowel movements, and sex, it's frequently dismissed or mistaken as a symptom of another health condition, which can lead to months or even years of misdiagnosis. This is especially true for younger women. "Studies indicate that up to 70 percent of teenagers with painful periods already have endometriosis," says Bruce Lessey, MD, PhD, a leading researcher of the condition and medical director of reproductive endocrinology and infertility at Greenville Hospital System University Medical Center in South Carolina. Doctors regularly prescribe birth control pills as the first line of defense against period pain, since moderating estrogen and progesterone levels has been shown to ease menstrual cramps. Lowering estrogen levels also eases endometriosis symptoms, however, so going on the pill may disguise the condition until a woman wants to start a family and discovers she can't conceive.