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Health Risks of DES Exposure


DES Daughters


Cancer and Adenosis

     The identification of a rare form of vaginal cancer (clear cell adenocarcinoma) in young women exposed to DES is what prompted the government to ban use of the drug in pregnancy. Fortunately, the risk of cancer from DES exposure appears to be small, less than one in 1000 DES daughters. However, it is important for your doctor to know of your DES exposure so that he or she can perform special examinations necessary to prevent or detect this cancer.

    Every year (or more often) you should have a four-part gynecological exam. DES specialists are most familiar with this exam, but any qualified OB/GYN can perform it.

1) a thorough pelvic exam with careful visual examination of the cervix and vagina

2) a very careful palpation (manual feeling) of the vaginal walls and bimanual examination where the doctor pushes on your outer abdomen while inserting a finger into the vagina

3) Pap smear of the cervix (this is the one that all women receive)

4) Pap smear of the vagina (a special "four-quadrant" smear of all four sides of the vagina). This is the most important part of the exam, since the majority of the cases of clear cell adenocarcinoma have arisen in the vagina, as opposed to the cervix. The vagina is typically obscured by the speculum in a routine exam.

     Your very first DES gynecologic exam should probably also include staining of the vaginal tissue to determine the presence of any abnormal cells. DES daughters often have tissue changes of the vagina known as "adenosis" which is the presence of glandular tissue where smooth, connective tissue should be. The easiest way to explain it is if the tissue inside of your mouth were to be present on the outside of your face. Adenosis can result in frequent vaginal irritation or infection.

     Another important test for DES daughters is a "colposcopy". This is an examination of the cervix and vagina through a lighted magnifying scope to detect the presence of tissue changes not visible to the examiner’s naked eye. Sometimes small biopsies are taken if suspicious areas are present.

Reproductive Tract Abnormalities

     A very large proportion of DES daughters have physical abnormalities of the reproductive organs due to their exposure. These structural changes of the fallopian tubes, cervix and uterus can result in multiple miscarriages, tubal or ectopic pregnancies, premature births, and primary and secondary infertility.

     The DES-related changes in the cervix are often referred to as "collars", "hoods", or "cockscombs" to physically describe the extra folds of tissue that surround or distort the cervix. In the uterus, DES exposure is manifested in misshapen, constricted, and hypoplastic or smaller than normal uterine cavities which make it difficult for a fertilized egg to attach, often resulting in miscarriage and/or infertility. Doctors often refer to these uterine changes by another descriptive term, the "T-shaped" uterus, because the DES-exposed uterus often resembles the shape of the letter "T" as opposed to the normal upside-down pear shape.

High-Risk Pregnancies

     DES daughters have a greatly increased risk for ectopic pregnancy, miscarriage, incompetent cervix and preterm labor and delivery. All DES daughters require high-risk prenatal care and early confirmation of their pregnancies. Perinatologists are doctors specializing in high risk pregnancies, and if your insurance plan permits it, you should consider consulting with one of these specialists. It is wise to discuss the potential effects of your exposure with your doctor before you try to become pregnant. If you have cervical abnormalities, your doctor may recommend a cerclage, or a stitching shut of the cervix, during the first trimester which can prevent premature dilation of the cervix.

Auto-Immune Disorders

     DES daughters are also apparently at increased risk for various auto-immune disorders such as lupus, rheumatoid arthritis, ulcerative colitis, optic neuritis, and thyroid conditions. Some studies have shown that women with adenosis appear to have an even greater risk of those conditions. Make your doctor aware of your DES exposure.


DES Sons

    
DES also affected male children of the women who took it. Studies have shown that some DES sons are at increased risk for one or more genital problems. These include underdeveloped tests, epididymal cysts, undescended testicles and lowered sperm counts resulting in decreased fertility. Other studies have demonstrated an increased risk in testicular cancer, although these results are somewhat controversial. If you are a DES son, you should see a urologist for a thorough examination.

DES Mothers

     Studies have shown that the women who took DES during their pregnancies have an increased risk of breast cancer. Make sure your physician knows that you ingested DES during your pregnancy before beginning hormone replacement therapy.

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