Our Campaign

For decades, the silent scandal that is DES has gone unnoticed and unreported. The UK government has failed to address the catastrophic impact that DES has had on thousands of people. Now, we’re calling for the government to take action, whether that be through a statutory public inquiry or a compensation fund for those impacted. We’re also fighting for a screening programme and improved public awareness of this issue.

We have so far managed to secure support from Layla Moran MP Chair of the Health and Social Care Select Committee, who has posed questions to Health Secretary Wes Streeting about what the government intends to do to address this issue. Clare Fletcher, Partner at Broudie Jackson Canter, appeared in ITV News’ documentary alongside DES Daughter Suzanne Massey to shine a light on this topic and explain why government action is so necessary. We will continue to apply pressure until we receive a response from our government.

Many of those who have suffered the effects of DES have had to do so alone, in silence. Others have only found out about DES’ effects and its potential impact on them through the media or word of mouth. The DES Daughters and Sons Support Group UK is a safe, private space ran by DES Daughter, Suzanne, for people who have experienced the negative effects of DES to come together and feel less alone. If you are someone who has suffered because of DES, you can join the support group below.

Many of those who have suffered the effects of DES have had to do so alone, in silence. Others have only found out about DES’ effects and its potential impact on them through the media or word of mouth. The DES Daughters and Sons Support Group UK is a safe, private space ran by DES Daughter, Suzanne, for people who have experienced the negative effects of DES to come together and feel less alone. If you are someone who has suffered because of DES, you can join the support group below. 

Across continental Europe, the use of DES was widespread during the 1950s to 1970s. A survey found that DES had been prescribed in 18 European countries, except for Sweden and Hungary. The heaviest usage was reported in France, the Netherlands, and Great Britain. France had an estimated 160,000 women exposed in utero, while the Netherlands saw 189,000–378,000 affected pregnancies between 1947 and 1975. Other notable users included Belgium, Spain, Portugal, Ireland, Germany, and Czechoslovakia.

In most countries, DES was promoted as a preventive measure for women with prior miscarriages or risk factors and sometimes even given without specific medical indications. Peak DES usage in Europe occurred in the late 1960s to early 1970s, slightly later than in the U.S. This delay meant that awareness of DES's ineffectiveness and dangers also lagged in Europe.

Some countries continued using DES until the late 1970s or 1980s. Ireland notably opened a dedicated DES clinic in Dublin in 1990 to follow up with DES-exposed mothers and children. Overall, hundreds of thousands of Europeans were exposed to DES, leading to international health repercussions.

In 1992, the National Cancer Institute in the US initiated a long-term study of individuals prenatally exposed to DES - known as the DES Follow-up Study. The participants were initially recruited from eight different medical centres and comprised five individual cohorts. Additionally, in 2000, the Institute began monitoring the daughters of DES daughters, referred to as third-generation women, through the DES Follow-up Study.

Researchers continue to investigate the health outcomes of DES daughters as they progress through menopause. A pilot study revealed altered oestrogen metabolism in postmenopausal DES daughters, suggesting that prenatal exposure to this endocrine disruptor may impact oestrogen metabolism many years later. The cancer risks for exposed sons are also under examination. Furthermore, researchers are exploring potential health effects on DES grandchildren.

DES Mothers (Women who took DES during pregnancy) have an increased risk of breast cancer. Studies suggest that these women have about a 30% higher risk of breast cancer compared to those who were not exposed to DES. This translates to approximately 1 in 6 DES-exposed mothers developing breast cancer over their lifetime, compared to 1 in 8 in the general female population.

This elevated risk appears to continue as DES Mothers age. However, DES exposure has not been linked to significant increases in other cancers or health issues beyond breast cancer. It is recommended that DES Mothers adhere to standard breast cancer screening guidelines and inform their healthcare providers about them.

DES Daughters (Women exposed to DES in utero) face various reproductive tract abnormalities and higher cancer risks, notably clear cell adenocarcinoma (CCA) of the vagina and cervix. They have about 40 times the risk of developing CCA compared to unexposed women, with approximately 1 in 1,000 having developed this cancer. Up to 30%-35% of DES daughters have structural anomalies like a T-shaped uterus or cervical malformations, leading to high rates of infertility and poor pregnancy outcomes, including miscarriage, ectopic pregnancy, preterm labour, and stillbirth.

DES Daughters are twice as likely to experience infertility and pregnancy loss and are 50% more likely to undergo premature menopause. Research indicates modestly higher breast cancer risk after age 40, though findings are inconsistent. Other vulnerabilities include elevated risks of cervical precancerous changes and cardiovascular issues, such as high blood pressure and heart disease. Specialised gynaecologic care is recommended for DES Daughters, including annual exams and monitoring for abnormal tissue changes.

DES Grandchildren (Third Generation): There are ongoing questions about whether the effects of DES exposure can be passed to subsequent generations through epigenetic changes. Animal studies in mice have shown third-generation effects, like elevated tumours. Preliminary data suggests DES granddaughters may have higher risks of infertility or menstrual irregularities, and DES grandsons may have increased rates of hypospadias.  

For example, a 2011 French cohort study found a modest increase in hypospadias among boys whose grandmothers took DES. These findings, based on small sample sizes, are not conclusive. Researchers are monitoring DES-exposed families for transgenerational effects. Currently, no specific screening is recommended for DES grandchildren, but research continues.