Each month K.C. Esperance, 31, a San Francisco nurse practitioner, suffered menstrual cramps so agonizing that she would take to her bed, curl up and pray that she would live through the next couple of days. Doctor after doctor gave her the same ineffectual advice: rest, take some codeine and bear with it.
During her teens, Maria Menna Perper, 42, a New Jersey biochemist, suffered intestinal problems around the time of her period. By her late 30s, she felt “excruciating, burning pain” in her colon every month “like clockwork.” Eventually the pain became continuous, and it was impossible for her to work or even sit down.
For Anne Hicks, 29, a Portland, Ore., real estate property manager, there were no obvious signs other than her inability to become pregnant.
Despite their differing complaints, each of the women eventually discovered that she suffered from the same insidious condition: endometriosis, an often unrecognized disease that afflicts anywhere from 4 million to 10 million American women and is a major cause of infertility. The condition is caused by the spread and growth of tissue from the lining of the uterus (or endometrium) beyond the uterine walls. These endometrial cells form bandlike patches and scars throughout the pelvis and around the ovaries and Fallopian tubes, resulting in a variety of symptoms and degrees of discomfort. Because endometriosis has been associated with delayed childbearing, it is sometimes called the “career woman’s disease.” But recent studies have shown that the disorder strikes women of all socioeconomic groups and even teenagers, though those with heavier, longer or more frequent periods may be especially susceptible. Says Dr. Donald Chatman of Chicago’s Michael Reese Hospital: “Endometriosis is an equal-opportunity disease.”
How the disease begins is something of a mystery. One theory ascribes it to “retrograde menstruation.” Instead of flowing down through the cervix and vagina, some menstrual blood and tissue back up through the Fallopian tubes and spill out into the pelvic cavity (see chart). Normally this errant flow is harmlessly absorbed, but in some cases the stray tissue may implant itself outside the uterus and continue to grow. A second theory suggests that the disease arises from misplaced embryonic cells that have lain scattered around the abdominal cavity since birth. When the monthly hormonal cycles begin at puberty, says Dr. Howard Judd, director of gynecological endocrinology at UCLA Medical Center, “some of these cells get stirred up and could be a major cause of endometriosis.”
If anything about endometriosis is clear, it is that once the disease has begun, it will probably get worse. Stimulated by the release of estrogen, the implanted tissue grows and spreads. Cells from the growths break away and are ferried by lymphatic fluid throughout the body, sometimes, although rarely, forming islands in the lungs, kidneys, bowel or even the nasal passages. There they respond to the menstrual cycle, causing monthly bleeding from the rectum or wherever else they have settled.
The most common symptom of endometriosis is pain, which can occur during menstruation, urination and sexual intercourse. Unfortunately, these warnings are often overlooked by women and their doctors. Cheri Bates, 31, of Seattle, describes the cramps she suffered as “outrageous,” but she assumed they were “normal.” By the time her condition was discovered, scar tissue covered her reproductive organs and parts of her bladder and intestines.
To confirm that a patient has endometriosis, doctors look for the telltale tissue by peering into the pelvic cavity with a fiber-optic instrument called a laparoscope. After diagnosis, a number of treatments can be prescribed. One is pregnancy–if it is still feasible; the nine-month interruption of menstruation can help shrink misplaced endometrial tissue. Taking birth- control pills may also help, but more effective is a drug called danazol, a synthetic male hormone that stops ovulation and causes endometrial tissue to shrivel. But it can also produce acne, facial-hair growth, weight gain and other side effects.
A new experimental treatment with perhaps fewer ill effects involves a synthetic substance called nafarelin, similar to gonadotropin-relea sing hormone. Normally GnRH is released in bursts by the hypothalamus gland, eventually triggering the process of ovulation. But “if the GnRH stimulation is given continuously instead of in pulses,” explains Dr. Robert Jaffe of the University of California, San Francisco, “the whole (ovulatory) system shuts off,” and the endometrial implants “virtually melt away.”
For severe cases of endometriosis, surgical removal of the ovaries and uterus may be the only solution. But less extreme surgery can often help. At Atlanta’s Northside Hospital, Dr. Camran Nezhat has had success with a high- tech procedure called videolaseroscopy, which employs a laparoscope rigged with a tiny video camera and a laser. The camera images, enlarged on a video screen, enable Nezhat to zero in on endometrial tissue and vaporize it with the laser. In a study of 102 previously infertile patients, Nezhat found that 60.7% were able to conceive within two years of videolaseroscopy treatment.
Like many other doctors who see the unfortunate consequences of endometriosis, Nezhat is concerned that a “lot of women do not seek help for this problem.” Any serious pain, he notes, needs investigating. Agrees Cheri Bates: “If a doctor tells you that suffering is a woman’s lot in life, get another doctor.”
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