Our Bodies, Ourselves (134 page)

Complementary medicine—especially nutritional approaches, traditional Chinese medicine, environmental medicine, and other treatments—has proved helpful for some women. Contact the Endometriosis Association for more information and refer to comprehensive books on the subject.

Connecting with other women who also have endometriosis can be very helpful. One way is through the Endometriosis Association Facebook page (facebook.com/EndoAssn) or local meet-ups. Getting support can decrease feelings of isolation and provide opportunities to counteract misinformation or a lack of information, as well as to share experiences with others who understand what you're going through.

The DES story is a cautionary tale of medical care gone awry.

DES (diethylstilbestrol) is a powerful synthetic estrogen that crosses the placenta of pregnant women and can damage the reproductive system of the developing fetus. DES may also affect other body systems: endocrine, immune, skeletal, and neurological. This drug was prescribed to an estimated 4.8 million U.S. women between 1938 and 1971 (and sometimes beyond) in the mistaken belief that it would prevent miscarriage. In fact, DES was untested for pregnancy use or safety, and studies showing that it did not prevent miscarriage were ignored for almost two decades. It was aggressively marketed and used worldwide, under more than two hundred brand names, in pills, injections, and suppositories, and sometimes in pregnancy vitamins, until it was found to be linked to a rare form of vaginal/cervical cancer (clear cell adenocarcinoma
of the vagina or cervix) in women who were exposed when their mother took the drug during pregnancy.

DES exposure during an embryo's development has lifelong effects that can't be reversed. For example, the cells of the endometrium (uterine lining) of an adult woman who was exposed to DES in the womb will act differently from those of a woman who wasn't exposed.

Outside the United States, DES was also prescribed during pregnancy in Canada, Ireland, France, the United Kingdom, the Netherlands, Australia, New Zealand, Israel, Russia, and Poland. Other countries may include Belgium, Czechoslovakia, Finland, Germany, Italy, Norway, Portugal, Spain, and Switzerland. DES use in some of these countries extended beyond the 1970s. Large generational studies of DES mothers, daughters, sons, and granddaughters by the National Cancer Institute DES Follow-up Study continue in the United States as a result of efforts by DES advocacy groups.

Several million people have been exposed to DES, most without knowing it. If you were born between 1938 and 1971, if your mother had problems with any of her pregnancies or remembers taking anything when she was pregnant with you, you could have been exposed. (DES was most widely used between 1947 and 1965, when “wonder drugs” were popular.) However, with the passage of time it has become increasingly difficult to be sure by finding medical records. Some health care providers or facilities no longer have old records or refuse to give out the information. Any women in the appropriate age group should try to find out if she is at risk. See DES Action (desaction.org) for the latest information about DES exposure.

One out of every thousand DES daughters is likely to develop clear-cell adenocarcinoma, a rare type of vaginal or cervical cancer. It has occurred in girls as young as seven and women up to age forty, with the peak at ages fifteen to twenty-two. Although the number of cases of clear-cell cancer has declined in the last three decades (mirroring decreased use of DES beginning in the 1970s), it continues to be found in DES daughters, some in their fifties. There is a suggestion of a possible increase in the number of cases as DES daughters reach menopause. If you are a DES daughter, you need a special
yearly DES exam
for the rest of your life.

Annual DES exams can find clear-cell cancer early, so it can be treated. This cancer grows quickly and sometimes has no symptoms in the early stages. Typical treatment for clear-cell cancer may include a radical hysterectomy, surgical removal of all or part of the vagina, and reconstruction of the vagina. Radiation treatment may be added. Eighty percent of women survive this cancer.

Studies show that DES daughters have a greater risk for a more common vaginal cancer, squamous cell carcinoma. You may also have adenosis—columnar cells where the usual squamous cells should be—around the cervix. If you do, you may be more vulnerable to precancerous or cancerous changes. Annual monitoring is recommended until any adenosis disappears; discuss this with your gynecologist and be sure she or he knows about your exposure. Dysplasia (abnormal cell change) is more common among DES daughters, but normal cell changes may be mistakenly seen as abnormal when your cervix is checked, leading to unnecessary treatment with possibly harmful effects. That's why it's important to find a health care provider with experience in DES screening.

Structural changes in the uterus and cervix are common in DES daughters. Cervical “collars” or “hoods” (adenosis) do not have to be treated and may disappear after age thirty. A smaller or T-shaped uterus may contribute to pregnancy problems (see below).

If you are a DES daughter over age forty, your risk for breast cancer may be almost two times greater than that of unexposed women.
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DES mothers, too, have developed more breast cancers than unexposed women—sometimes as long as twenty years after exposure—so both mothers and daughters should get a clinical breast exam every year, in addition to doing self-exams to become familiar with the normal look and feel of their breasts. Women exposed to DES should report any changes to their health care provider. Annual mammography or other additional screening exams are also appropriate for DES daughters.

Contraception for DES daughters poses some special considerations. Birth control pills may be risky, since they increase estrogen exposure in someone already at higher risk of hormone-related cancer. IUDs may not be safe because of cervical and uterine abnormalities. Barrier methods (condom, diaphragm) are probably the safest choice overall.

Pregnancy problems have resulted from structural abnormalities in the uterus and cervix of DES daughters. You might have trouble conceiving, or be more likely to miscarry, deliver prematurely, or have an ectopic (tubal) pregnancy (in the fallopian tube instead of the uterus). A pregnant DES daughter needs high-risk obstetrical care. Checking early in pregnancy for signs of problems may help prevent serious complications.

The doctor [who] was doing my DES exams didn't know anything about pregnancy problems for DES daughters. So I brought him seven articles that DES Action gave me. We both read them, and as a result, he checked my cervix at every prenatal visit. It took fifteen seconds and took away tons of anxiety
.

Other problems, including endometriosis, menstrual irregularities, and pelvic inflammatory disease, have been reported by many DES daughters. DES sons have increased risk of urogenital problems. Recent studies have shown that DES granddaughters may have delayed menstruation regularity and DES grandsons may have an increased risk of hypospadias (in which the urethral opening on the penis is in the wrong place). Tell your doctor if you are a DES grandchild and be vigilant for any new information about DES.

The annual DES exam for DES daughters is similar to a regular Pap test and pelvic exam, but it is more comprehensive, because changes caused by DES do not usually show up in routine exams. A copy of directions for doing the exam is available from DES Action for you to show your doctor. The exam should include careful visual inspection of the vagina and cervix, gentle palpation of the vaginal walls, Pap tests from the cervix and from the surfaces of the upper vagina, and a
bimanual pelvic exam
. Sometimes iodine staining (Schiller's test) of the vagina and cervix is used to distinguish normal tissue (which stains brown) from adenosis (which does not stain). These tests will indicate anything that might need further testing by colposcopy or biopsy. Even after a hysterectomy, DES daughters still need an annual gynecological exam. Daughters can contact DES Action at 1-800-337-9288 or [email protected].

The United States has the highest hysterectomy rate in the industrialized world. Statistics from 2004 indicate that about one-third of all U.S. women have had a hysterectomy by the age of sixty. Today, about 90 percent of hysterectomies are done by choice and not as an emergency or lifesaving procedure. Various studies have concluded that anywhere from 10 percent to 90 percent of those operations were not really needed, but many physicians continue to recommend them. This surgery has certainly saved lives and restored health for many women, but unnecessary operations have needlessly exposed women to risks. There is increasing understanding that a woman's uterus and ovaries have value during midlife and beyond, so the view
of a woman's uterus and ovaries as “expendable” during later periods in our lives is now obsolete.

Both hysterectomy (removal of the uterus) and oophorectomy (removal of the ovaries) are major surgery and may have long-term effects on our health, sexuality, and life expectancy. Because of the controversy over high hysterectomy and oophorectomy rates, many insurance plans now require a second opinion from another physician before agreeing to pay for the procedures. Because some surgeons recommend hysterectomy routinely, women need to understand when the surgery is truly necessary (see
sidebar
).

Fortunately, diagnostic and therapeutic techniques such as sonography, Pap tests, hysteroscopy, endometrial ablation, and laparoscopy make it possible to avoid or delay many hysterectomies that might have been done in the past. It is important to consider and utilize these techniques before resorting to major surgeries.

The most recent data suggest that black women have a somewhat higher hysterectomy rate than white women, possibly because black women are more likely to have fibroids. In the past, hysterectomy was performed solely for the purpose of sterilization among many poorer women and women of color in the United States, and this history affects the overall rate of hysterectomy among women of color. The problem of sterilization abuse led to federal sterilization guidelines in 1979, but the practice of performing medically unindicated hysterectomies continued for many years. It is likely that the rates of unnecessary hysterectomies have dropped only relatively recently.

Whenever you have any doubts about the need for a hysterectomy and/or oophorectomy, seek one or more other opinions about possible alternative approaches (such as a myomectomy, which removes fibroids without removing the uterus).

Oophorectomy is removal of either one (unilateral) or both (bilateral) ovaries. The fallopian tube(s) may be removed as well. Common reasons for oophorectomy include benign tumors of the ovary such as an endometrioma or dermoid; ovarian cancer; pelvic infection; and ectopic pregnancy (a pregnancy that occurs outside the uterus). In many cases, benign tumors, dermoid cysts, and endometriomas (cysts of endometriosis) can be removed without taking out the ovaries. Large functional cysts (fluid-filled sacs that often form during a menstrual cycle) can also be removed in this way, if they are not reabsorbed on their own. Women who have mutations of the BRCA1 or BRCA2 genes are at higher risk for ovarian cancer and sometimes have their ovaries removed as prevention.

If only one ovary is removed and not your uterus, you will continue to be fertile and have menstrual periods. However, you may experience an earlier menopause. If both ovaries are removed, you will experience
surgical menopause
. Even if one ovary is retained, you may have menopause-like symptoms due to loss of blood supply to the remaining ovary. (Such symptoms are also possible when both ovaries are retained after a hysterectomy.)

The ovaries usually continue to produce some hormones after menopause. Routine removal of healthy ovaries of women over forty-five during a scheduled hysterectomy should no longer be done,
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even though some doctors still try to justify an oophorectomy to prevent the possibility of future ovarian cancer. Evidence now shows that removing ovaries in this way does far more harm than good, because so many more women will die from heart disease and osteoporotic fractures resulting from the surgery than from the relatively small number of ovarian cancers that would be prevented. For more information, see “Hysterectomy and Ovarian Conservation” at ourbodiesourselves.org.