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.