ONGOING CARE

DES daughters of all ages need to get the recommended pelvic examination annually, beginning at puberty. Learn what is involved in the recommended pelvic exam for DES daughters so that you can be sure you receive it. Early detection of cancer saves lives.

Recommended Pelvic Exam

The recommended pelvic examination for DES daughters is somewhat different from the routine exam for other women. This exam is recommended annually for DES daughters of all ages. You should feel comfortable with your medical care and confident that you are getting complete exam.

How to Get the Recommended Exam
Tell you medical provider that you are DES-exposed. Discuss the recommended pelvic exam for DES daughters with him or her and ask if you are receiving it. You can refer to the description of the exam below to make sure you receive this care.

DES-related Changes
If the procedures described on the following pages detect DES-related changes, you may be asked to return more than once a year for repeat exams. The doctor will usually put a photograph or drawing of any abnormal areas in your medical records. He or she will talk with you about any changes over time in these areas.

The Physical Exam
The doctor or nurse will look at the outside of your genitals (vulva). Another step is a bimanual exam: With one hand on the abdomen and the fingers of the other hand inside the vagina, he or she will feel the uterus, tubes and ovaries. This is usually not painful. You may have a sensation of slight pressure and movement inside the abdomen. The examiner will also feel the lining of the vagina for any lumps or growths.

WHAT TO DO

This is the recommended pelvic exam for DES daughters of all ages. The correct exam always includes:

A careful visual inspection and gentle palpation (feeling) of the entire vagina
Separate Pap smears from the cervix and from the surfaces of the upper vagina
A bimanual exam (the examiner feels the uterus, tubes, and ovaries with the fingers of one hand inside the vagina and the other hand on the abdomen)

An exam may also include:

Iodine staining of the vagina and cervix (normal tissue stains brown)
Depending on the results of these tests, further procedures may be necessary, such as colposcopy and biopsy

The recommended pelvic exam for a DES daughter is different from a routine women's exam. In the routine exam, the Pap smear is taken only from the cervix. In the DES exam, a separate Pap smear is taken from the surfaces of the upper vagina as well.

Pap Smear

As in a routine exam, the doctor or nurse uses a small "duck bill" shaped instrument (speculum) to hold the soft vaginal walls apart so that both the vagina and cervix can be seen. A Pap smear is also taken. A wooden spatula (similar to a thin popsicle stick) is used to gently scrape the surface of the cervix and the vaginal tissues surrounding it. Using a small brush or similar device, cells are collected from within the cervical opening.

Colposcopy

A colposcope is a large device that works like a magnifying glass or binoculars. It is placed on a stand between you and the doctor and does not enter your body.

Though doctors do not agree that a colposcopic exam is always needed, some use it routinely. DES experts state that a colposcopy must be done if Pap smear results are not normal.

Colposcopy and iodine staining may also be used for women who are not DES-exposed. When a Pap smear reveals abnormal cells, a colposcopy can show both abnormal tissue and its exact location.

While looking through a colposcope, the doctor or nurse carefully inspects the surfaces of the vagina and cervix, moving the speculum so that the entire vagina and cervix can be checked. Photographs may also be taken of the area so that in future visits your condition can be observed for changes that might signal a problem.

Colposcope

Iodine Staining

When more information about changes in the vagina or cervix is needed, iodine staining may be used. A water-based, diluted iodine solution is painted on certain areas in the cervix or vagina with a cotton swab. It makes the normal tissue dark brown. You may feel the sensation of a cool liquid.

Biopsy

Sometimes a small piece of tissue is removed for study under a microscope. This common procedure is called a biopsy. Many women say the procedure feels like a quick pinch, but the procedure can be uncomfortable or occasionally painful. The largest tissue sample removed is about this size: O. Biopsy may cause some spotting.

FINDING A DOCTOR

If you need to find a doctor who is experienced in caring for DES daughters:

Call one of the DES consumer organizations listed on page 42.
Call the Ob/Gyn department of the nearest medical school. Ask if they have a DES clinic or can refer you to a doctor or clinic in your area.
Call your State Board of Medical Examiners or your local Medical Society for referrals.
You can also get information from family planning clinics, public health nurses and your local county health department.

COPING WITH DES EXPOSURE

Coming to terms with DES exposure is a personal process that includes learning as much as possible about the known health effects of DES, finding a knowledgeable health care provider, and communicating well with family members and friends about your concerns. Many people also wish to learn about the history of DES in order to better understand the many factors that led to the use of DES during pregnancy.

The majority of DES daughters, DES sons, and women who took DES do not have health problems related to DES exposure. But the possibility of adverse health effects and the many unknowns about DES can be a potential worry. If you are exposed to DES, take care of your own health. Your efforts to stay informed about DES exposure and your commitment to recommended preventive care are your best course of action.

For those DES daughters and sons who do develop DES-related health problems, the consequences of DES exposure are all too real. Although DES exposure does not usually interfere with a normal, healthy life, some people do experience major losses because of DES. Reproductive abnormalities, infertility, pregnancy loss, or a diagnosis of cancer are profoundly disturbing events that can have long lasting consequences. The subsequent treatments, discomforts, losses, and adjustments can be traumatic and enormously stressful. One of the most difficult aspects that DES-exposed individuals with health problems face is that there are often no clear answers. But healing can take place over a period of time. DES daughters, sons and women who took DES can seek support from family, friends, support groups, or from a professional counselor such as a clinical social worker, clinical psychologist, or psychiatrist. The opportunity to speak freely with others who are DES-exposed and who are experiencing similar problems has been a valuable resource for thousands of DES-exposed people. See page 33 for a list of resource organizations.

TALKING ABOUT DES

Talking with family members, friends, and co-workers about DES is a way to help others discover if they are exposed. It is not unusual to find other who were exposed to DES. Share this booklet with them.

Talking with your mother about DES can be difficult. You may want to get the booklet in this series which discusses how mothers and their adult children can talk with each other about DES.

If your mother is living, talk with her about DES. As DES mothers may have a small increase in risk for breast cancer, encourage her to get regular mammograms, and to practice breast self-examination. There is a booklet in this series especially for her. You may want to suggest that she get it.

Help your siblings find out if they are DES-exposed (they are only considered DES-exposed if you mother also took DES while pregnant with them). Help them to learn about DES.

Share this booklet with your sister(s). For your brother(s), there is a booklet in this series especially for DES sons.