by Dixie Farley
"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.
Endometriosis sometimes causes premenstrual staining and, as the period progresses, heavy menstrual flow.
Often, endometriosis remains hidden a long time. A symptom such as pain at menstruation may not be seen as unusual, explains Mary Lou Ballweg, executive director of the Endometriosis Association.
"Perhaps a young woman is told by Mom, who had the same problems, that menstrual pain is normal," Ballweg says. "So she just lives with it and doesn't see a doctor until the symptoms become unbearable. Some young women with endometriosis have apparently normal menstrual periods for years before having discomfort and pain. Others report they've nearly always had difficult periods."
As many as 30 percent of women who report infertility problems have endometriosis.
Severe endometriosis can lead to infertility in various ways. In the ovaries, it can produce cysts that prevent the egg's release. In the fallopian tubes, implants can block the passage of the egg. Also, adhesions can fix ovaries and tubes in place so that projections on the tubes can't grasp the egg and move it into the tube. The effect of mild endometriosis on infertility is less clear.
Women with endometriosis may have a higher rate of "ectopic" pregnancy, a potentially life-threatening condition in which the fertilized egg begins to develop outside the womb.
The most common way to see whether a woman has endometriosis is by surgical examination using laparoscopy, a fairly simple procedure usually done without an overnight hospital stay. The doctor makes a tiny incision and inserts a lighted, flexible, telescope-like device called a laparoscope that allows a close look at the pelvis and internal organs. However, sometimes the implants themselves can only be seen through microscopic evaluation of biopsy specimens.
Drugs for endometriosis should not be taken by women who are, or who may be, pregnant.
The earliest drug approved to treat endometriosis was Danocrine (danazol), a synthetic steroid related to the hormone testosterone. Taken orally, in pill form, Danocrine changes endometrial tissue, shrinking and eliminating implants in some cases. Side effects include fluid retention, weight gain, and masculinizing effects such as voice change, hairiness, and reduction of breast size. Other side effects include menstrual irregularities, hot flashes, and vaginal dryness.
Other drugs, related to gonadotropin-releasing hormone (GnRH), act in a different way to decrease the hormones that make abnormal implants grow. One version is a nasal spray called Synarel (nafarelin acetate). In clinical studies, Synarel, at 400 or 800 micrograms a day (within the prescribed dosage range), was comparable to Danocrine at 800 milligrams a day (the recommended dosage) in relieving the clinical symptoms of endometriosis (such as pain) and in reducing the size of implants. Side effects include non-menstrual vaginal bleeding or ovarian cysts during the first two months of use, cessation of menstruation, hot flashes, headaches, decreased sex drive, vaginal dryness, acne, reduction in breast size, and a small loss in bone density. In clinical trials, about 10 percent of the patients experience nasal irritation from the spray.
Other drugs approved for treatment of endometriosis that are chemically related to Synarel include Lupron Depot (leuprolide acetate), a drug injected monthly into muscle, and Zoladex (goserelin acetate implant), which is injected under the skin of the upper abdomen. These drugs don't cause nasal irritation, but otherwise their side effects are similar to those of Synarel, and their effectiveness is also similar.
Women taking endometriosis drugs need to watch for problems such as difficulty breathing or chest or leg pain, which may indicate a blood clot and should be reported to the doctor immediately. Other possible severe side effects include irregular heart rhythms. Frequent checkups are needed to monitor effects such as possible thinning of the bones. A patient should immediately report any new or worsened symptoms to the doctor. However, it's normal for endometriosis symptoms to temporarily worsen when a woman begins taking medicine.
Sometimes medicine is not enough. Surgery may be needed to remove diseased tissue or to correct misaligned organs.
One method to remove diseased tissue combines laparoscopy with laser surgery. The laser is connected to the laparoscope and positioned so that its intense light beam is directed through the laparoscope onto the tissue to destroy it. The procedure usually is done without an overnight hospital stay and requires only about a week's recovery time at home.
Recurrence rates after treatment need further study, Ballweg says.
The monthly pain and heavy menstrual periods of chronic endometriosis can be frustrating and painful, and can lead to conceiving and infertility problems. But today, with prompt diagnosis and treatment, a young woman's life can often return to normal.
Dixie Farley is a staff writer for FDA Consumer.
For more information, contact:International Endometriosis Association 8585 N. 76th PlaceMilwaukee, WI 532231-800-992-3636
Publication No. (FDA) 93-1205