From PEOPLE Magazine Click to enlarge
Endometriosis is a word foreign to most people, yet the disease is one of the most common gynecological ailments afflicting American women today. More prevalent than breast cancer, it causes incapacitating pain and infertility in many of its victims. It has been called "the career woman's disease" because postponed parenthood enables it to progress. While it is now known that the estimated four million to seven million sufferers encompass all ages, races and socioeconomic groups, the label has stuck.

The doctor who knows as much about this baffling disease as anyone is Lyle Breitkopf, 50, assistant clinical professor of obstetrics and gynecology at New York University Medical Center and director of the Endometriosis Clinic of New York Infirmary-Beekman Downtown Hospital, the only one of its kind in the country. Dealing with a disease for which there is no guaranteed cure, Dr. Breitkopf has observed the guilt, anger and frustration of those afflicted with endometriosis. He met with Assistant Editor Bonnie Johnson to discuss the facts, theories and myths surrounding the disease.

What is endometriosis?

It's a disease of menstruating women that takes its name from "endometrium," the word for the tissue that lines the uterus. During a woman's regular menstrual cycle, the endometrium responds to changing levels of the hormones estrogen and progesterone as it grows and thickens with blood vessels and glands in preparation for pregnancy. If fertilization does not take place, this tissue lining the uterus breaks down and bleeds and is regularly discharged each month through the vagina.

How does the disease affect women?

In endometriosis, this same normal endometrial tissue grows outside the uterus. The most common sites are the ovaries and the ligaments that support the uterus, as well as the bowel, the fallopian tubes, the bladder and urinary tract, the small intestine, rectum, cervix and vagina. Endometrial growths have even been found in distant locations like the lungs and the nose, but this is uncommon. Like the endometrium, these growths build up, break down and bleed each month in response to hormonal changes. But unlike the uterine lining, they have no way of leaving the body.

What is the result?

Unless the hormonal cycle is interrupted through pregnancy or menopause, which causes the implants to atrophy, the result is a progressive, monthly cycle of internal bleeding and inflammation that eventually leads to the formation of large amounts of scar tissue. Over time this can cause impairment of the affected organs. Cysts can form from the congealed blood and scar tissue. If the cysts rupture, the disease can spread to new areas.

How do these endometrial cells get to these other sites outside the uterus?

That's anybody's guess. A commonly accepted theory says that, during menstruation, blood flows not only out through the vagina but also back up through the fallopian tubes into the abdominal cavity. However, this doesn't explain those distant locations I mentioned or the fact that about 90 percent of all women who menstruate experience some degree of backing up of fluid during menstruation.

How does a woman know whether she has endometriosis?

The most common symptoms are a dull and persistent pain during menstruation, pain during intercourse and abnormal bleeding. These symptoms vary widely from patient to patient. Another condition associated with endometriosis is infertility. Between 50 percent and 70 percent of all women who have endometriosis are infertile. But it is possible for a woman who has no symptoms and who never tries to conceive to go through life unaware that she has the disease.

How does it cause infertility?

The factors are not all understood. If there is scar tissue binding the fallopian tubes to the ovaries, the tube may be prevented from sweeping over the surface of the ovary to receive the egg. Hormone levels may be altered because of endometrial growths on the ovary. It's not at all clear.

What effect does postponing child-bearing have on the disease?

It allows endometriosis to progress. Therefore, we suggest to our patients who want children to consider pregnancy at the earliest possible time. Not only does postponement reduce a woman's chances of conceiving, but her chances of sustaining the pregnancy become less and less with time. There is a high incidence of miscarriage among women with undiagnosed endometriosis.

How is the disease diagnosed?

Because its symptoms are similar to other disorders, patients often go undiagnosed for years. With many of these women, you find they have a history going back into their teens. But it isn't until they try to get pregnant, and can't, that they find out what is wrong.

What are some symptoms that may cause misdiagnosis?

Sometimes the disease appears as a fever of unknown origin, and it will be misdiagnosed as a pelvic inflammatory disease. About 50 percent of women with the disease have some bowel involvement that causes symptoms like painful bowel movements, rectal bleeding, constipation or other signs mistakenly attributed to irritable bowel syndrome. Actually I believe the real number of women with endometriosis is closer to 10 million.

Can endometriosis be detected during a pelvic examination?

It's possible for a doctor to feel some endometrial implants with his or her hands. The danger is confusing it with ovarian tumors. Treatment with female hormones, which is common in endometriosis, could cause a cancer to spread. The only way to really make a diagnosis is by laparoscopy.

What does that entail?

It's a surgical procedure done under general anesthesia. A laparoscope, a viewing instrument, is inserted into the patient's abdomen through a tiny incision below her navel. Carbon dioxide gas is pumped into the abdominal cavity to distend it and make the organs easier to see. By moving the laparoscope, a doctor can see the growths. But laparoscopy has pitfalls. It costs about $2,000, and the physician has to be skilled in recognizing the disease. I've known of misdiagnoses.

Once correctly diagnosed, how is endometriosis treated?

Treatment is basically limited to medication and/ or surgery. In the early stages, when it can be treated most effectively, medication is ideal. We use either oral contraceptives, which contain estrogen and/ or progesterone, to create a false pregnancy, or danazol, a male hormone derivative, which causes a false menopause. The patient usually stays on the drug up to nine months, during which time menstruation stops completely. Patients who are planning to get pregnant are encouraged to start trying from three months to 12 months after they stop taking the drug.

Is medication a cure?

No. Unless a patient becomes pregnant she may begin forming new growths anywhere from a few months to a few years after treatment stops. There are also possible side effects to be considered, including depression and weight gain from danazol, and nausea, vomiting and possibly blood clots from oral contraceptives.

When is surgery indicated?

If medication fails, the surgical removal of the implants by cautery or laser is the next step, especially if the patient wants to become pregnant. With surgery we can also cut away a lot of scar tissue to further enhance the ability to conceive.

What long-term effect does pregnancy have on the disease?

It can be very beneficial. I have seen the disease go into remission for as long as 10 years from pregnancy. Then again, I've seen remissions as short as nine months, so pregnancy is not necessarily a curative. The only cure for endometriosis is hysterectomy, removal of the ovaries, and that isn't 100 percent effective. If even a little piece of ovarian tissue is left, perhaps hidden in the mass of scar tissue, it may be enough to keep the disease active.

What role does stress play?

Stress doesn't cause the disease. The disease causes stress. A disease that threatens sexuality, that threatens family life, that threatens childbearing is a stressful phenomenon. There is no question in my mind, however, that stress makes this disease worse. I don't know how it works, but I've seen it. Once the stress is removed by some counseling, patients deal with it a lot better. If I have a patient who is considering a hysterectomy, I will send her to the Endometriosis Association to speak with women who've already had it done. They can tell her what she's going to go through.

What if endometriosis is left untreated?

The natural course of the disease is progression. It may get to the point where the patient has severe pain throughout the entire menstrual cycle, so much so that she becomes what I call a pelvic cripple. She can't function. She can't have intercourse. She probably won't be able to have children, and she'll be dependent on pain medication. At times' she will be able to come to grips with the pain enough to carry on her work, but that's it. She'll have her job and pain, plus the anger and frustration of having a chronic disease.

Is endometriosis ever life-threatening?

No, it just threatens the quality of life, and that's the problem.