What is DES?
 Introduction
DES is short for Diethylstilbestrol, a synthetic oestrogen (female sex hormone) that was prescribed during the 1950s, 1960s and early 1970s to pregnant women mainly to prevent miscarriage but also for complications in pregnancy such as diabetes and high blood pressure.
This has left two key DES-exposed groups: DES mothers and their daughters and sons. DES has been found to cause birth defects in the reproductive tracts of some DES children, and it also causes a rare form of cancer of the vagina or cervix in some DES daughters.
This leaflet outlines the main health consequences of DES exposure, and answers some key questions for those who are affected. |
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How do you know if you took DES during pregnancy, or if your mother took DES while pregnant with you?
It is not known how many people in the UK are DES exposed but on a pro rata basis with research done in the Netherlands and in the US, the total number of people exposed in the UK may be as high as 200,000.
In the UK, DES was usually known as stilboestrol. However, it was sold under many brand names and was administered in both tablet and injection form, in various doses, for varying amounts of time.
People can confirm whether they were exposed if they obtain access to their medical records. A woman who was pregnant between 1940 and 1971 and had problems during pregnancy may have been given DES. If you think that you or your mother used a hormone such as DES during pregnancy, and if you are able to recall the circumstances of the pregnancy then try to contact the original doctor or hospital where the delivery took place. If you can obtain records you will then be able to confirm the dosage. However, the passage of time may mean that your medical records may not have been stored.
What are the reasons for vigilance?
In 1971 it was discovered that DES could cause a rare form of vaginal cancer. The cancer is clear cell adenocarcinoma (CCAC) found in some daughters whose mothers were prescribed DES in pregnancy.
The statistics show that about 1 in 1000 DES daughters will develop or have already developed this cancer.
The average age at which this cancer occurs is 19 years. The cancer is curable when detected early.
The symptoms of this silent cancer can relatively easily be identified with regular colposcopy and appropriate smears (see DES: physical issues).
Other symptoms include mostly benign effects but also some which are more lasting in their consequences. The most common are malformations in the reproductive tract of daughters and consequent pregnancy problems. Sons of DES-exposed mothers may have benign structural abnormalities of the reproductive tract.
In 1977 the Committee on the Safety of Medicines in the UK requested manufacturers of DES to list the contraindications to DES on all packages.
It is now only used in the UK for the treatment of prostate cancer, and is withdrawn from all other uses.
Elsewhere however, in Uganda, Nigeria, Ghana, South Africa, Mexico and Columbia, DES is reportedly still used, possibly in pregnancy.
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