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Last Updated: January 29, 2012
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DES - Diethystilbestrol
On this page: Eileen Capocchi; Yvonne Smith; Marian Vickers
See also: Women's Lib/Feminism

Eileen Capocchi

Then there was the DES campaign. That was an important one. It was long and hard. The pharmaceutical Companies weren't going to admit they were responsible for deformed children.

We finally achieved some right of women to decide what do with their own bodies, including having an abortion if they believed it was necessary.

It is a very bitter pill to see these things we fought so hard for being eroded now.

Yvonne Smith

The side effects of the use of DES (diethylstilbestrol) came to our notice, and Joan Curlewis asked if I would see what could be done to instigate an action group.

It seemed that very many women had been affected through their mothers having been prescribed this drug during pregnancy, for the purpose of preventing miscarriage.

It had been found that the incidence of clear cell carcinoma in the daughters of these women had skyrocketed. Adeno-carcinoma was a seldom occurrence prior to 1970, when the daughters reached their teens. Then many displayed symptoms and some died.

It seemed women who had taken DES were also developing a most malignant form of breast cancer. (See IN OUR OWN HANDS, a Women's Health Manual Hyland House 1980) Although I wasn't affected, I had, like many other women, a couple of abortions earlier in my life and I and other women I know, had been given DES to stop lactation.

So I took on this work of getting women who had taken DES together. With UAW resources a luncheon and public meeting were held and many wonderful and active young women got together and formed DES Action, which is still operating, collecting and exchanging information from overseas, keeping women informed.

There may still be women out there who have no idea they were exposed to this drug.

Doctors and gynaecologists denied they prescribed it. Some were very well known obstetricians. The women had to really fight to get any details given to them.

Some of the mothers were told during their pregnancy that they were given 'vitamin pills', some weren't given any information at all. Others were told they were given DES 'just in case'. Of course, many G.P's didn't understand the special way to diagnose the particular type of pre cancerous symptom.

One battle DES Action had was to establish a proper clinic at the Women's Hospital specifically to diagnose and monitor DES caused damage and abnormalities. Marion Vickers did wonderful research and was successful in getting wide television coverage, which resulted in hundreds of women contacting the organisation and being given information and support.

There were groups of DES set up right across Australia.

Marian Vickers

I have often wondered why. DES or di-ethyl-stilboestrol is a synthetic oestrogen. In Australia DES was more commonly known as stilboestrol. However we now know any oestrogenic drug can have the same effects or health outcomes.

For over 30 years (early 1940s to 1970s) it was prescribed during pregnancy in the mistaken belief that it prevented miscarriage. It was also mixed with vitamins and prescribed as a general pregnancy 'tonic'.

In 1971 it was discovered that DES caused a rare form of vaginal cancer in DES daughters i.e. women who were exposed to DES in utero. That is, the cancer was latent, emerging years after the original exposure. In addition, the cancer was symptomless, aggressive and a routine Pap smear doesn't detect it.

I always thought that prescription drugs were safe. And, furthermore, if a drug was suddenly found to be harmful, I thought you would be informed. After all, they recall cars if they are found to be faulty, if they put lives at risk. And they recall and issue public warnings if salami is found to have salmonella.

So what was the reaction of health authorities to this DES disaster? Both here and elsewhere in the world - silence. In September 1979 the DES issue received publicity in the media.

A Melbourne couple, whose daughter had died of the cancer, were interviewed on This Day Tonight. My mother, Hazel Vickers, was watching and to her horror realised that she had been prescribed the drug, and so my involvement with the DES issue began. The reaction of the health authorities in 1979? To say that "DES wasn't used in Australia."

This was then changed to "only a few women" had been prescribed DES, and "they have all been notified." I can still remember how alone and how scared I felt: Trying to find a doctor who knew the proper screening test, being constantly derided, patronised and dismissed by doctors (usually in the middle of the examination!). The level of hostility was unbelievable.

Luckily the Union of Australian Women organised a public meeting for interested women. I remember clearly the relief mum and I felt at that meeting - just meeting other DES daughters and mothers and sharing experiences. At the meeting Bon Hull outlined the history, effects and the politics of the DES issue. A small group formed consisting of DES mothers and daughters, and interested women. The UAW "assigned" Yvonne Smith to help the fledgling group and she was an invaluable resource, providing support and practical suggestions.

Wendy Lowenstein also was a great support, and in fact lent us her PO box as our address until we organised our own. Yvonne, Bon and Wendy were our early mentors and great role models. Since 1971 medical research has revealed an ever-increasing range of long-term effects of oestrogen exposure. I have often thought it was like a stone thrown into a pond, with the ripples slowly moving out in ever-widening circles.

DES mothers have higher rates of breast cancer. Many DES daughters and DES sons have DES-related structural abnormalities of the reproductive tract. In addition both groups have increased risk of cancers of the reproductive tract, increased rates of infertility and reproductive problems.

Further research showed increased rates of autoimmune disease, thyroid dysfunction, chronic fatigue and depression in the DES population. Recent experimental animal research shows that DES effects may be passed down to the next generation, to "DES grandchildren."

So why did I become an activist with DES Action? I think it was the shock, the sense of injustice: Why weren't we told? Why weren't we warned? Because not only were we not warned, the health authorities actively put out misleading information, and actively dismissed us. And this continues today.

The experience lead to a shift in my perception of how the world works. And why have I stayed involved? Because in a sense I have no choice: I am a DES daughter and (unfortunately) it appears my daughters are "DES granddaughters".

Recently there has been renewed interest in DES population by the international scientific community. DES is now recognised as an endocrine disruptor. Many scientists believe endocrine disruption will be the most important global health issue of the future. Rather than explain it here, please visit our website: www.desaction.org.au

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