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Generations affected by mothers' miscarriage drug

Diethylstilbestrol (DES) hasn't been used in the UK since the early 1970s, but there are concerns it can affect the children – and possible grandchildren - of women who were given it to prevent miscarriage. Read our FAQs.
WebMD UK Health News
Medically Reviewed by Dr Roger Henderson

23rd January 2012 - Lawyers in America are already seeking compensation for women affected by a banned miscarriage treatment and similar action may now be taken in British courts. What is Diethylstilbestrol (DES) and what do we know about the risks?

What is Diethylstilbestrol (DES)?

Diethylstilbestrol (DES), also known as diethylstilboestrol and stilboestrol, is a synthetic form of the female hormone oestrogen. It was prescribed in the UK for many women with pregnancy problems between 1938 to 1971 to help reduce the risk of miscarriage.

Cancer Research UK says the use of DES became more rare after research in the 1960s found it was not effective. Also, when given during the first five months of a pregnancy, it can affect the baby's developing reproductive system. This may cause infertility later in life.

In 1971 the medicine was banned after researchers discovered a link between diethylstilbestrol and cancer in children of women who'd taken it.

The charity DES Action UK says the drug is sometimes referred to as the "hidden thalidamide". Those affected are known as DES daughters and sons.

DES Action UK says it is not known how many people in the UK have been exposed to DES but, based on figures from other countries, the total number of people exposed in the UK may be as high as 300,000.

Cancer in women

Diethylstilbestrol is a risk factor for vaginal cancer, including clear cell adenocarcinoma.

The NHS says the risk of vaginal cancer associated with using diethylstilbestrol is small and cases linked to DES are rare.

Cancer Research UK says DES is also linked to rare cancers called clear cell adenomas of the cervix. It also cites research from 2006 which found that daughters of women who'd taken DES also have an increased risk of breast cancer in their 40s. It says DES has also been linked to increased risks of infertility, miscarriage and premature birth in daughters.

Advice to women

The Royal College of Obstetricians and Gynaecologists advises women exposed in the womb to DES to see their doctor to arrange a colposcopic examination. If that test is clear, then only routine cervical screening is required.

If the test showed any abnormality, annual colposcopic examinations of the vagina and cervix may be needed for life.

The NHS Breast Cancer Screening Programme says DES exposed women are now at an age when breast cancer is common. It says it is particularly important that these women take up their invitation to breast screening when it is offered and remain breast aware at all times.

Cancer in men

Cancer Research UK says no clear evidence has been found linking DES exposure in the womb to testicular cancer in male children of mothers who took the drug. However, there is a higher rate of undescended testicles, which is a risk factor for testicular cancer.

Reviewed on January 23, 2012

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