A DRUG prescribed to 300,000 women has been dubbed ‘the hidden thalidomide’ as it’s feared to have triggered rare cancers.
Experts fear that the harms of the drug could be “passed down generations”.
Infertility, internal abnormalities and heightened risk of cancer may affect the children and grandchildren of women given the drug, not just the mums themselves.
Diethylstilbestrol, commonly known as DES, was a synthetic form of the hormone oestrogen and hailed as wonder drug when it was first dished out.
Between the 1938 and and 1973 it was given to women prevent miscarriage and early labour, dry up breast milk production and treat menopausal symptoms.
Doctors and public officials raised safety warnings about DES from the 1950s onwards, yet it continued to be prescribed for another 20 years.
It was finally withdrawn when medical researchers found that users were at increased risk of rare cervical, vaginal and breast cancers.
It also began to emerge that DES harms could affect second and third generations.
Women exposed to the drug in the womb who went onto develop side effects from the drugs are dubbed daughters of DES.
It’s estimated that 300,000 women were given it, but poor NHS record keeping means that many women may never know for sure if they were exposed to the drug – hence it being called “the hidden thalidomide“.
As part of an investigation into the controversial drug, ITV News spoke to more than 100 women who believe they were exposed to DES.
Suzanne Massey, 56, from Liverpool, believes her mum was given it while she was pregnant.
[bc_video account_id=”5067014667001″ application_id=”” aspect_ratio=”16:9″ autoplay=”” caption=”Cervical cancer warning signs you should NEVER ignore, with Doctor Philippa Kaye” embed=”in-page” experience_id=”” height=”100%” language_detection=”” max_height=”360px” max_width=”640px” min_width=”0px” mute=”” padding_top=”56%” picture_in_picture=”” player_id=”default” playlist_id=”” playsinline=”” sizing=”responsive” video_id=”6339006367112″ video_ids=”” width=”640px”]She blamed DES for a lifetime of “destructive” health problems that have left her unable to walk at times due to severe pain and forced her to undergo “barbaric” procedures.
“It’s a pain that no woman should have to go through, it’s been barbaric at times,” Suzanne 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.”
After years of invasive procedures, doctors discovered that Suzanne’s reproductive system was covered in rare, abnormal cells and she was later forced to undergo a hysterectomy.
She’s now preparing to take legal action.
Her lawyer Clare Fletcher, a partner at law firm Broudie Jackson Canter, said the government was at fault and needed to pay pay compensation to victims of the “horrendous drug” who’d sustained “lifelong injuries”.
She also called on the government to come clean about “what they knew about this drug and when”.
[boxout headline=”Diethylstilbestrol (DES) explained “]Diethylstilbestrol (DES) is a synthetic form of the female hormone estrogen.
It was prescribed to pregnant women to prevent miscarriage, premature labour, and related complications of pregnancy.
The use of DES declined after studies in the 1950s showed that it was not effective in preventing these problems, although it continued to be used to stop lactation, for emergency contraception, and to treat menopausal symptoms in women.
In 1971, researchers linked DES exposure in the womb to a rare type of cancer of the cervix and vagina called clear cell adenocarcinoma.
Soon after, the US Food and Drug Administration (FDA) notified health care providers that DES should not be prescribed to pregnant women.
The drug continued to be prescribed to pregnant women in Europe until 1978.
DES is now known to be an endocrine-disrupting chemical, one of a number of substances that interfere with the endocrine system to potentially cause cancer, birth defects, and other developmental abnormalities.
Women exposed to the drug while in the womb are at higher risk of:
- Clear cell adenocarcinoma
- Breast cancer
- Pancreatic cancer
- Cervical cancers
Source: National Cancer Institute
The Medicines and Healthcare products Regulatory Agency (MHRA) said it was recognised in 1971 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 was contacted by women who believe they were given the drug as late as 1978/79.
It also spoke to three generations of a family who fear their health complications could be connected to DES.
Jan Hall, 75, from Bournemouth, believes her mum Rita was prescribed DES during three pregnancies and that exposure contributed to her death, aged 32, from breast cancer in 1951.
Jan was diagnosed with cervical cancer in her 20s and her daughters have also gynaecological problems including abnormal smears and pre-cancerous cells in the cervix.
Doctors have suggested rolling out an enhanced cancer screening programme for people exposed to DES.
Dr Ahmed Talaat, consultant gynaecologist and gynaecological cancer surgeon at the University Hospitals Plymouth NHS Trust has treated 12 DES daughters and screens them regularly for cancer.
He told ITV News: “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 said.
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.”