Pregnancy drug DES is like 'hidden thalidomide' as women 'face higher cancer risk for treatment'

A pregnancy drug given to hundreds of thousands of women has been described as a ‘hidden thalidomide’ - with the harm passed down “generations”. An News investigation has led to more than 100 women fearing their health has been damaged because of Diethylstilbestrol, commonly known as DES.

Some who have come forward are suffering from "barbaric" pain and rare cancers but it is feared there could be thousands more. It’s estimated up to 300,000 women were prescribed the controversial drug by the , a synthetic form of the female hormone oestrogen, between the late 1930s and 1973. It was eventually withdrawn, apart from for certain cancers and age groups, when medical researchers found links with cervical, vaginal and breast cancer.

Now there are calls for public health screening for those exposed who are at higher risk of cancers of the reproductive system. ITV claims that despite official guidance saying it should be stopped for use in 1971 and known links to cancer, it was still being given to women as late as 1979 in some parts of Britain.

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Women are calling on the government to set up a compensation scheme and carry out a nationwide investigation. Suzanne Massey, 56, from Liverpool, believes an anti-miscarriage drug given to her mum while she was pregnant is to blame for a lifetime of health woes. At times the pain has been so severe she says she was left unable to walk.

“It’s a pain that no woman should have to go through. It’s been barbaric at times,” she told ITV News. “I’ve been in hospital for procedures or operations every year for the last 25 years. I want awareness, screening and compensation, because it’s taken some of my life away, and I can’t get that back.”

Suzanne eventually had a hysterectomy after doctors discovered rare and abnormal cells. She was told that she was exposed to DES in her mother’s womb.

The drug was prescribed on the NHS for four decades to treat complications and to dry up breast milk. Medical evidence suggests women who took the drug during pregnancy are at an increased risk of breast cancer.

Three generations of the Hall family fear their health complications could be connected to DES exposure. Jan Hall, 75, from Bournemouth, believes her mum Rita Milburn, who served in the war as a nurse, was prescribed DES during three pregnancies and that exposure contributed to her death.

Rita died aged 32 from breast cancer in 1951 when Jan was still a toddler. Her daughter Jan from Bournemouth, told ITV she has since suffered a lifetime of health problems, including a diagnosis of cervical cancer in her twenties. And she revealed her own daughters have also had problems including abnormal smears and pre-cancerous cells.

“It’s an unusual thing, that it carries from generation to generation, thalidomide did not carry from generation to generation. Terrible though thalidomide was, it stopped at those children, this doesn’t,” Jan said.

The Medicines and Healthcare products Regulatory Agency said that in 1971 it was recognised that DES could cause a distinct type of cancer in the daughters of women who took it in early pregnancy. The Committee on Safety of Medicines wrote to all doctors in May 1973 to advise against the use of DES in pregnancy and women who have not yet gone through menopause.

Yet ITV News has been contacted by women who believe they were given the drug as late as 1978/79. Dr Ahmed Talaat, Consultant Gynaecologist and Gynaecological Cancer Surgeon at the University Plymouth NHS Trust has treated 12 DES daughters who he screens regularly for cancer.

“The risk of cancer including cancer of vagina, or the cervix is nearly doubled in patients whose mothers received DES. That’s why they should be under close observation. Regular screening,” he told ITV.

While thousands of DES victims have sued pharmaceutical companies in the US, France and the Netherlands, there have been no successful cases in the UK. In response to ITV's investigation, A Department of Health and Social Care spokesperson said: “Our sympathies are with anyone harmed by the historic use of Diethylstilboestrol (DES). We will continue to explore what support can be offered to those impacted by the use of this drug.”

They confirmed the administration of DES to young people and pregnant or pre-menopausal women has been advised against since the early 1970s. But they said DES remains a treatment option for some patients suffering specific cancers such as prostate cancer and metastatic postmenopausal breast cancer.

Dr Wael Agur, a Consultant Urogynaecologist and advisor to the Scottish Government, has treated women who were exposed to the drug and told ITV Tonight in February. "This drug increases the risk of breast cancer in the women who took it.

"People call it the hidden thalidomide, because it is there, we know it is there, but we don't know what is the size of the problem." Dr Agur also wants a full inquiry to ascertain how many women have been exposed to the drug.

The full report was on ITV News at 7pm on Thursday