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McKesson Clinical Reference Systems: Women's Health Advisor 2002.2
Diethylstilbestrol (DES)
After reading this handout you will know what
diethylstilbestrol (DES) is and what conditions it has been
used to treat. You will also find out what physical
problems have been found in mothers and children of mothers
who took DES during their pregnancies.
What is diethylstilbestrol (DES)?
Diethylstilbestrol (DES) is a synthetic (man-made) estrogen
that has been used:
- to treat underdeveloped ovaries
- to treat the symptoms of menopause such as hot flashes,
sweating, and dryness of the vagina
- to treat problems with menstruation
- to stop milk production in mothers who do not want to
nurse
- as an after-sex contraceptive.
In the past, it was believed that DES could prevent
miscarriages, preterm labor, and other complications of
pregnancy. From 1941 to 1971, 4 to 6 million American women
were given DES during pregnancy. However, mothers and the
children of mothers who took DES are at risk for certain
reproductive problems. As a result, in 1971 the federal
drug administration issued a warning that DES should not be
given to pregnant women.
How are mothers who took DES affected?
Mothers who took DES have an increased risk of breast
cancer. Also, some researchers believe that any added
estrogen could increase this risk of breast cancer.
Therefore, if you are one of the mothers who took DES, you
may not want to have estrogen replacement therapy. Ask your
health care provider about this.
How are sons of mothers who took DES affected?
Researchers and doctors discovered that the children of
mothers who took DES during pregnancy were more likely to
have certain problems when they reached puberty. Sons were
born with abnormal urinary and reproductive tracts. Some
have developed cancer of the testicles. Others have poor
sperm production and are infertile. Because of the
increased risk of cancer of the testicles, DES sons should
check themselves on a monthly basis by gently rolling their
testicles between their fingers. If a lump is discovered,
it should be reported at once to a health care provider.
DES sons who fail to create a pregnancy after a year of
trying might consider seeing an infertility specialist.
If I am a DES daughter, how might I be affected?
- The most common change is the presence of a type of
tissue in the vagina called adenosis. This tissue is
normally found in the cervical canal (opening to the
uterus), but in DES daughters it is also found in the
vagina. Because adenosis produces mucus, you may have a
discharge that can be mistaken for an infection. This
discharge does not need treatment and will lessen as the
adenosis lessens. Adenosis is usually covered by normal
tissue over time. It is usually no longer visible once
you are over 30 years old.
- You may have an extra ridge of tissue growth on the
cervix that looks like a collar or hood. This may make
it difficult to use a diaphragm for birth control. The
ridge may disappear over time.
- Other structural changes you may have are a small or
T-shaped uterus and abnormal fallopian tubes. This can
make getting pregnant and carrying a baby to full term
difficult. There is also a greater chance that the baby
will start to grow in one of the fallopian tubes (ectopic
pregnancy).
- A small number (1 in 1,000) of DES daughters develop a
rare cancer of the vagina or cervix called clear cell
adenocarcinoma. This usually appears between 15 and 27
years of age. If found early, this cancer can be treated
with surgery and radiation. Some women who were treated
have later had recurrences of cancer in their lungs and
other parts of their body.
When should I see my health care provider about this
concern?
If your mother was given DES while she was pregnant with
you, you should see a women's health care specialist as soon
as you begin menstruating or by age 14. You should have a
pelvic exam and Pap smear at least once a year thereafter or
more often if your provider recommends it.
What is included in a DES exam?
- Your health care provider will carefully look at and feel
your vagina and cervix for any physical differences.
- Your provider will swab your cervix and vagina with a
long swab (Pap smear) and send the sample to the lab to
be looked at under a microscope.
- Your provider will paint your vagina and cervix with
iodine to check for abnormal tissue. Normal tissue
stains brown and adenosis does not stain.
Depending on the results of these tests, other procedures
may be necessary, such as colposcopy (looking at your vagina
and cervix through a magnifying glass) and biopsy (taking a
small amount of tissue to be checked in the laboratory).
If I am a DES daughter, can I have normal pregnancies?
Many DES daughters have no problem getting pregnant and
have normal pregnancies. However, because of the possible
structural abnormalities of the reproductive organs and
adenosis, you may have menstrual irregularities and problems
getting pregnant and carrying a baby to full term.
If you become pregnant, it is important to get medical care
from a health care provider familiar with the problems DES
daughters may have. Your higher risk for ectopic
pregnancies makes it important for you to see your provider
as soon as you think you are pregnant. Your provider will
want to make sure the pregnancy is in your uterus. In
ectopic pregnancies the pregnancy is in the fallopian tubes,
cervix, ovary, or abdomen. An ectopic pregnancy can
threaten your life and must be ended as soon as possible.
Your risk for miscarriage and premature birth also are
higher, so you need to learn the signs and symptoms of these
problems from your prenatal care provider as soon as
possible. You will need to see your provider frequently
(weekly to biweekly) during your pregnancy. If your risk
for miscarriage is great, it may be recommended that your
cervix be stitched closed (cerclage) until labor begins.
Can I use birth control pills?
Recent studies indicate that women exposed to DES can take
birth control pills without added risk.
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