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A mother's curse: DES, a timebomb for daughters

Sunday, October 10, 1999
In the 1940s, '50s and '60s, women with histories of miscarriages who wanted bright, bouncy babies were put on a hormone called Diethyl Stilboestrol -- DES.

Marketed under a variety of names, it was dished out in handfuls to expectant mothers, and later even used to retard growth in girls considered unsociably tall.

We are now beginning to realise that DES was like slow-acting Thalidomide, causing deformities in offspring which were not apparent at birth but discovered later in adulthood.

Liz Hayes talks with Australian women whose mothers took DES, and who are now showing up with deformities to reproductive organs, and an aggressive vaginal cancer.

And she learns that the doctors who originally prescribed the hormone are now ducking for cover, afraid to accept the vast body of evidence linking DES with severe health problems.

  • For a brochure on the DES examination and more information, contact our chat guest, Carol Devine -- co-ordinator of the DES Support Group NSW -- by sending a business-sized envelope to: Carol Devine, DES Support Group NSW, 14 Edmundson Close, Thornleigh, NSW 2120.
  • Ms Devine recommends the DES Action USA web site as a comprehensive source of information on DES. It also has a list of further resources.
  • Tall Girls Australia has a web site to support women who, as girls, were exposed to synthetic estrogens to inhibit their growth, and includes a list of more contacts in Australia.
  • The American DES Cancer Network has a timeline of DES's history.

  • ninemsn in association with 60 Minutes presents a live interview with Carol Devine, coordinator of the DES Support Group, NSW. Carol is talking about DES, a hormone that was dished out in handfuls to expectant mothers during the '40s, '50s and '60s.

    Host Dave 9msn says: Good evening Carol. We're glad to have you with us to answer our questions.

    Host Carol Devine says: Good evening, thank you for having me.

    Host Dave 9msn asks: How did you first become involved in the DES Support Group?

    Host Carol Devine says: I was a member of DES Action Australia for a number of years and in 1995 I became concerned about the risks to DES daughters as they reach menopause. So then I established DES Support NSW.

    Kurty asks: Carol, why did so many mothers use the drug when they did not know the full side effects?

    Host Carol Devine says: At the time when the women took the drug the side effects were not known. In fact they were not known until the DES daughters reached adulthood.

    Klayman asks: What sort of dosages were given to mothers? Isn't the term "handfuls" unnecessarily emotive?

    Host Carol Devine says: No. Many DES mothers can testify to have taken the large numbers of pills. The dosage regimes varied for DES mothers.

    Wally asks: Does DES affect the children of DES daughters or sons, the so-called "third generation"?

    Host Carol Devine says: So far we can't say the effect for sure on the third generation. Last October, studies were done in the USA on third generation DES-exposed mice. This study showed the occurrence of tumors in the third-generation mice, and therefore more money has been funded in the USA to further studies on the third generation.

    Kurty asks: Carol, how early into people taking the drug was it noticed people getting sick and having problems with themselves?

    Host Carol Devine says: In the early '70s there were instances of DES cancer occurring in DES daughters and then it was during the '80s that it was found that DES sons and daughters can have reproductive abnormalities attributed to DES.

    Wally asks: Carol, what about menopause? And hormone replacement therapy? Do you know whether any research has been done for the effect of DES?

    Host Carol Devine says: On the issue of taking extra hormones, DES action USA in their literature advise women to be careful of taking extra hormones because experts at this stage are unsure as to whether taking extra hormones will increase cancer risks in DES-exposed women. I am not aware of any studies that have been done on DES exposed women in relation to taking HRT.

    Kurty asks: Carol, how many mothers and daughters took the drug DES, and how many cases do you think you don't know of that are still around?

    Host Carol Devine says: I will presume that Kurty is referring to cases in Australia. At the moment there is no data in Australia on the extent of DES exposure. The cases that could still be around, I am unable to answer that question for Australia. But in the USA, 50 percent of those DES-exposed are still unaware of the fact.

    Agnes asks: Carol: do you see that the "powers that be" were actually working in everyone's best interest when they released this drug, and that the problems that have been encountered were genuinely not perceived at the time?

    Host Carol Devine says: If one does read the history of the development of the DES story, what comes to notice strongly is that in 1953 there was a study done by Dieckman which showed DES to be ineffective. It also showed the increased risk of miscarriage in DES mothers. In spite of that finding DES continued to be prescribed and marketed.

    Concerned asks: Is pro-luetin ( a precursor to progesterone, I think) related to DES? It is a hormone also taken in pregnancy to prevent miscarriage. What is the hormone in DES?

    Host Carol Devine says: Pro-luetin to my knowledge is a progesterone, was and is used to prevent miscarriage. DES on the other hand was a synthetic estrogen, a different hormone.

    ziggy asks: Does this drug affect men?

    Host Carol Devine says: DES affected DES sons as well, although not as many sons as daughters have suffered the effects. DES sons can have urogenital problems, possibly infertility, and there have been studies that have shown testicular cancer but so far testicular cancer is not conclusive.

    moodai asks: Hi, can you tell me what names the drug was known by?

    Host Carol Devine says: DES came in over 200 brand names.

    Kurty asks: Carol, what is the time limit if any to having kids after taking the drug?

    Host Carol Devine says: I have read in literature that DES is expelled from the body in 24 hours after taking it. I am asked often if DES affects future pregnancies after a DES mother has taken the drug. Scientists think that DES does not affect the woman's eggs.

    jenn asks: Is it inevitable that cancer will occur in DES-exposed daughters?

    Host Carol Devine says: The DES-related cancer in DES daughters occurs in one in 1000 of the daughters. But we do not know the upper age limit of that cancer occurring. And the particular cancer is not always detected by a pap smear. There is a special DES examination that DES daughters should have every year for the rest of their lives.

    Anna asks: If I am a daughter of a DES mother, can it cause chromosomal disorders in my eggs?

    Host Carol Devine says: I don't believe that has been researched as to the effects on the eggs. However, there are some DES daughters that believe this is true.

    swan asks: As yet, my daughters remain unaffected. I need to know f this has a chance of affecting them?

    Host Carol Devine says: Presuming that your daughters are DES-exposed, I am unable to answer your question. There are some DES daughters who have had no child-bearing difficulties. But I am unable to say what the future holds in the health scenario for DES daughters, sons and mothers.

    sandy asks: Are tall girls who have taken DES prone to the same side effects as DES daughters?

    Host Carol Devine says: The problems that DES tall girls have encountered have been infertility, polycystic ovaries, depression. So far that is what has been shown to us in the DES tall girls.

    Teen asks: l am a DES daughter who has three children, two girls and a boy. What tests should they have?

    Host Carol Devine says: I think to keep it simple, if someone has been confirmed as having DES it is best that they send me a self-addressed stamped envelope for a brochure which outlines these concerns. For specific information on DES please send self-addressed business-sized envelope to Carol Devine, 14 Edmundson Close, Thornleigh, NSW, 2120.

    dino asks: Carol ... you mentioned that there are 200 DES descriptions, my mother cannot recall DES, how can I obtain the common names. I suffer from reproductive anomalies.

    Host Carol Devine says: I do have a listing of the most commonly used brand names in Australia. If you would like this listing please once again send a self-addressed stamped envelope to the above address, and put a note inside stating that you want this listing.

    Dol asks: Could you provide information on the DES examination?

    Host Carol Devine says: The DES examination is outlined in our brochure.

    healthnut asks: What drug has replaced DES these days?

    Host Carol Devine says: LOL ... I really can't answer that question. Hopefully there is nothing like it!

    Clanah asks: Has it been shown that DES has effects in grandchildren as well?

    Host Carol Devine says: So far we are not sure of the effect on the third generation. Last year there were studies done on third-generation exposed mice in the USA.. The results of those studies showed the occurrence of tumors and this has resulted in USA funding further research on the third generation.

    panay asks: How, by whom and where was the link discovered?

    Host Carol Devine says: In the late 1960's Professor A. Herbst in the USA discovered the DES cancer link when he noticed an incidence of a rare vaginal and cervical cancer in adolescent girls whose mothers had taken DES. Previously this rare cancer type had only occurred in women in old age.

    kenwen asks: How can we go about establishing a register for those of us in Australia whose mothers were prescribed DES?

    Host Carol Devine says: The establishment of a register on DES in my opinion would involve publicity campaigns and the willingness of Government bodies to follow through.

    hb asks: Why the cover up by the Govt and Drs, are they afraid of legal action?

    Host Carol Devine says: To my knowledge so far there has never been any doctor sued in relation to DES. The legal action that has taken place in the USA has been taken against pharmaceutical companies. It is my feeling that perhaps there is reticence in dealing with the DES issue because it was a medical mistake.

    Clanah asks: Is there work being done to investigate a drug to counter the effects of DES?

    Host Carol Devine says: No, not to my knowledge.

    dave asks: What cures are known for this drug?

    Host Carol Devine says: I do not know of any cure for the effects of DES. The reproductive abnormalities that occur with DES exposure are irreversible. Just recently there was a break through of a surgical technique in France to help enlarge the cavity of the uterus in a DES daughter.

    cody asks: Where can I get information regarding this drug?

    Host Carol Devine says: There is a website on DES. http// This site is very informative and should help you out.

    Host Dave 9msn says: Thanks again very much for being with us and answering our questions. It's been a very informative interview. We wish you and the DES Support Group every success.

    Host Carol Devine says: It has been indeed my pleasure to respond to your questions tonight.

    Host Dave 9msn says: This concludes our 60 Minutes live interview with Carol Devine, 10 October 1999. Produced by ninemsn in Sydney, Australia. ninemsn ¸1999
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