Guidelines for DES-exposed Women and Men
- Talking to
your health care provider
If you know you are DES-exposed, or think you may be, tell your doctor.
Make sure your history of DES exposure is recorded.
- Learning if
you are DES-exposed
If you were born between 1941 and 1971 and are unsure you
are DES-exposed, see a doctor who is experienced in the care of
DES-exposed individuals. Ask your doctor if there is evidence of any
changes in your reproductive tract. Ask your mother, or her relatives,
about her history of pregnancy problems. Was she prescribed any
or vitamins during her pregnancy with you to prevent miscarriage, or
improve the pregnancy?
If you were pregnant
between 1941 - 1971, review your history of pregnancy problems. Were
you given medication or vitamins during pregnancy to prevent
miscarriage, or improve the pregnancy? This may indicate DES exposure.
To access records: Contact the Department of Medical Records at the
hospital where you were born or gave birth. Ask for information about
how to request your records. Typically you will be asked to write a
letter requesting your records, with you name, date of the birth, and
name of doctor. Request a record of medications taken during
pregnancy. Some hospitals keep records for up to thirty years or more.
If you know the doctor who took over your obstetrician's practice,
or the spouse of the obstetrician, you may ask if your records can
be accessed. If you know the pharmacy where your DES was purchased you
may request a copy of a prescription. State the approximate dates
the prescription would have been filled. For military records write
to: National Personnel Records Center, 9700 Page Blvd., St. Louis, MO
- Talking to
your family and friends
If you are DES-exposed you may want to talk with members of your family
about DES and what you are learning. Talking about DES can help educate
and heal. As you talk about DES with physicians, family, and friends
you may learn more, feel more confident, and help others. It is
estimated that there are 10 million DES mothers, daughters,
and sons in the US. By talking about DES, you will begin to meet others
who share a history of DES exposure.
- DES Daughters
- Women exposed to DES in
utero (DES Daughters) have a higher incidence of ectopic pregnancy,
miscarriage, premature delivery, and increased incidence of abnormal
pap smears (dysplasia) and cervical carcinoma in situ.
- DES Daughters are at
increased risk for a rare cancer of the vagina or cervix, called clear
cell cancer. Approximately one in 1,000 DES Daughters are at risk to
develop the cancer, although this number may turn out to be higher as
the DES Daughters age. So far, clear cell adenocarcinoma has been
found in DES daughters between the ages of seven and 42.
- At this time the upper
age limit for the development of the cancer is unknown.
Exams and Check ups:
DES Daughters should have a gynecological exam once a year consisting
-Thorough pelvic examination, with careful visual examination
-Cervical Pap test
-Vaginal Pap test taken from all four sides of the vagina (4-quadrant)
-Palpation (manual feeling) of the vagina.
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.
The initial DES
examination should include: Iodine stain (to indicate abnormal areas of
tissue) and colposcopy (use of magnifying instrument to examine
Some doctors use a
coloposcope routinely, but a colposcopy may be necessary only when
there is change in the tissue of cervix or vagina or abnormal pap
smear. A biopsy may be performed when there is indication of an
abnormal pap test.
- DES Sons
- Studies show that men
exposed to DES in utero (DES Sons) have increased incidence of:
-Epididymal cysts ( cysts on the ducts behind the testicle)
-Hypoplastic testicle (underdeveloped testicle)
-Cryptorchidism (undescended testicle)
- A small number of studies
on DES Sons raise questions about low sperm count and poor sperm
mobility. Some DES Sons have developed testicular cancer, but research
has not established a link to in utero DES exposure.
Exams and Check ups:
DES Sons should practice regular testicular self-exams. They should
discuss concerns about DES with their physician and consult a urologist
about genitourinary problems.
- DES Mothers
Women prescribed DES during pregnancy have a slightly increased risk
for breast cancer. One study showed a 30% increased risk for breast
Exams and Check ups:
DES Mothers should follow guidelines for breast cancer screening:
Monthly breast self-exam, yearly breast exam by a health care
practitioner, and annual mammogram beginning at age 50. An annual
gynecologic exam, with Pap smear is recommended.
- DES Research
DES research has mainly focused on the effects of DES on the
reproductive system of DES Daughters. There has been little research on
DES Sons, DES Mothers, the grandchildren (DES Third Generation), or on
the effect of DES to the immune, endocrine, skeletal, or cardiovascular
systems. Preliminary studies show DES daughters have increased
incidence of autoimmune problems. A past decline in DES research means
current information on the effects of DES is scant. Fortunately,
efforts by DES consumer organizations, working with Congress and the
National Institutes of Health (NIH), have brought about renewed
commitment to DES research. Major new studies, begun in 1993, are
carrying out important programs of DES education and studies on the
long term medical effects of DES exposure.
Health Care Guidelines for
DES-exposed women and men was adapted from Public Health
Recommendations for DES-exposed from: "NIH Workshop on Long-Term
Effects of Exposure to Diethylstilbestrol (DES)," published in April
1992. You may obtain a
free copy of the NIH publication by calling 1-800-4-CANCER