Diethylstilbestrol DES

Not just a mouthful, the first world’s drug disaster!

Diethylstilboestrol in the UK… what is it?

Diethylstilbestrol (or Di-ethyl-Stilbestrol) or DES is the first synthetic man made female sex hormone (oestrogen) prescribed for public use mainly between 1938 and 1971 (but not limited to those years). Used primarily under the erroneous assumption that it would prevent miscarriage and complications in pregnancy, diethylstilbestrol was a common medication administered by doctors in North America, Europe, and Australia for more than 40 years. Aggressive marketing pushed DES (spelled diethylstilboestrol in the UK) to also be used for more than one hundred additional medical conditions.

Seen as a medical miracle to help women with pregnancy issues and a dependable source of steady income for pharmaceutical companies, diethylstilbestrol was given to millions of women around the world. It was meant to be a wonder drug for expecting moms but its devastating impacts are now hitting their daughters and sons, decades later. Diethylstilboestrol was considered safe and effective for both mothers and their developing babies until the Food and Drug Administration (FDA) advised physicians in 1971 to discontinue prescribing diethylstilboestrol in pregnant women because of its link to a rare vaginal cancer.

In Australia, the drug was prescribed from the early 1940’s to the 1970’s for the same reasons as in the other countries. It was also prescribed during the adoption process in the late 1960’s and early 1970’s. It was administered to prevent lactation in unmarried mothers forced to give their babies at birth under Australia’s adoption policies and laws.

Other therapeutic use of diethylstilbestrol was post menopause syndrome.

The first problems with diethylstilbestrol began to surface in 1971, when the adult daughters of DES mothers began developing adenocarcinoma of the vagina, a condition only rarely seen before then. Following a 1971 published report citing health concerns for mothers and children, the FDA advised physicians to discontinue prescribing diethylstilbestrol in pregnant women because of its link to this rare vaginal cancer. In some European countries such as France, the drug continued to be prescribed until 1977 under the name Distilbène®.

The use of diethylstilbestrol was never banned and continued to be prescribed in some countries through the 1990s when the only approved indications for DES were treatment of advanced prostate cancer and treatment of advanced breast cancer in postmenopausal women. The last remaining U.S. manufacturer of diethylstilbestrol stopped making and marketing DES in 1997.

Researchers are still uncovering frightening facts about the life-long diethylstilbestrol side effects, including higher rates of breast cancer in DES mothers, reproductive abnormalities in daughters and sons, higher rates of ectopic pregnancy in daughters, and damage to the endocrine and immune systems.

More than 60 years of research have confirmed that diethylstilbestrol is a teratogen: an agent that can cause malformations of an embryo or foetus. It is reported that exposure to synthetic oestrogen during critical stages of child development in the uterus increases the risk of abnormalities which can result in structural, functional, or long-term pathological changes including cancer.

Injuries surface years after exposure, so life-long health consequences are in question, including whether DES may affect a third generation of grandchildren. To this day, many questions remain unanswered and the full extent of this drug’s disaster is yet to be seen.

It is still not known how many people are DES exposed worldwide. Many people remain unaware of their exposure and the potential adverse health effects of diethylstilbestrol. Many don’t make the link between DES exposure and the health problems they are facing and sometimes even doctors don’t make that link either.

Anyone born or pregnant in the US between 1938 and 1971, and until the mid-’80s in some European countries (until 1977 in France), may have been exposed. In the United States alone an estimated 5 -10 million people were exposed to Diethylstilbestrol, including women who were prescribed DES while pregnant, and the children born of those pregnancies.

On a pro rata basis with research done in the Netherlands and in America, the total number of people exposed to Diethylstilboestrol in the UK may be as high as 300,000. An estimated 200,000 French mothers have been prescribed DES and have given birth to 160,000 DES exposed daughters and sons. For Australia, an estimated 740,000 individuals have been DES exposed. DES has been and still is a well kept secret, a taboo subject not only in families but within the medical community too.

Diethylstilbestrol has put the mothers prescribed the drug, their daughters and sons exposed in utero, and potentially their grand-children at risk for serious health problems including but not limited to structural damages in reproductive organs, high risk pregnancies and miscarriage, vaginal cancer, infertility and possible immune system impairment.

Effects on the third generation – DES grandchildren – are as yet unknown since the full effects of diethylstilbestrol may not be seen until an exposed child reaches the age of reproduction.

The youngest DES daughters should reach the age of menopause by 2040 at the latest so unfortunately we have to remain vigilant for quite a while. The diethylstilbestrol issue will not be finished until these three generations of DES-exposed mothers, daughters, DES sons and grand-children are gone. Diethylstilbestrol has affected and continues to affect, in many different ways, millions of people. My DES daughter journey started with a miscarriage prior to a DES pregnancy and now continues with constant fear for my daughters, my mum and my own health like many, many, many other DES daughters less lucky that I have been so far. Diethylstilbestrol is a world drug disaster yet very few people know about it and about its tragic multi-generational consequences.