E-drug: Stilboestrol adverse effects
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Dear Sir/Madam,
Approximately 17 months ago a group of women in Australia discovered they
had been part of an experimental trial using the following drugs
diethylstilboestrol (DES), ethinyloestradiol, norethisterone. The trial was
conducted on organically healthy girls who were very tall, in an effort to
'stunt their height'. This trial was conducted between 1959-1975 using
heroic doses of the drugs mentioned. The children were approximately 10
years of age (although some as young as 8 years of age) and were subjected
to the experiment for up to 4 years duration.
The parents were not informed that this was an experimental trial. They
were lead to believe that this was a bonafide treatment without any long
term side effects or ill effects. If reassurance was not sufficient that
the 'treatment' was extremely safe and had been used with 'safety' for
years, other inducements were used. For example, parents were told that
there daughters would have to have pieces of bone removed from their long
bones to correct the 'predicted' extreme height that would 'inevitably'
happen.
The women's discovery of the trials was made possible by the research of
two investigative newspaper journalists: Gary Hughes ,'The Age' in
Melbourne, and Gerard Ryle also at 'The Age' at the time, but now at 'The
Sydney Morning Herald'. They appeared to be interested in post-war
experimentation and unearthed the research papers. As the women came
forward we developed into a group called Tall Girls Inc, as that is what the
media and research papers dubbed us. A documentary was made by another
Investigative journalist - Belinda Hawkins at network SBS in Melbourne,
Australia.
The women are now suffering a variety of reproductive and infertility
problems. Most of us never made any connection between the 'treatment' we
received and DES. As we were either too young to understand the drug name
which was labelled 'stilboestrol' and later to make any connection to the
term DES and the effects on DES daughters. Enquiries to gynaecologists led
to very little further information. We are a distinct group of people who
are suffering similar reproductive problems like the DES daughters without
the structural defects of the reproductive system that they have suffered.
The Tall Girls group has developed a database of 135 women and the following
statistics have been developed from phone testimony or questionnaires
returned to us. These histories are far from complete or definitive, but
certain trends are apparent. Of the 135 - 1 in 3 have experienced ovarian
cysts; 1 in 3 have had problems with fertility; 1 in 5 have endometriosis; 1
in 10 fibroids; 1 in 10 have had an hysterectomy and 1 in 6 a miscarriage.
We believe that these figures are a reason for concern.
The endocrinologist who instituted this trial brought back the foundations
of it from Boston, America. We have had contact with two American women
similarly treated as children, who have the same reproductive and health
problems as their counterparts in Australia - they have found us. It
concerns our group that there are also a large contingent of women in
America and Europe who are at risk and probably wondering why they are
having many reproductive and health problems. They are also at double risk
if their mothers were give DES.
I have read an article recently sent by a 'Tall Girl' in America written by
'The Boston Sunday Globe', dated March 5th, 1967 (page 1 and 14), it
mentions that the 'treatment' was thought about in the 1940's but
'treatment' was put off for fear it might interfere with fertility. The
article then
states....'The work at the Children's service of the M.G.H., headed by Dr
Nathan Talbot, and in other leading centres from Boston to Melbourne,
Australia indicate the therapy is safe. Unfortunately, the trial was still
at too early a stage to convey this comforting information. It also did
not have any real significance in reducing height.
There is a lot more to this story that I cannot convey to you about the
mechanics and spread of this 'treatment'. At this time though, it is
paramount that the women concerned are notified of the research and its
possible repercussions. We have thought about relaying this information
and the effects emotionally it may have. If our experience, in Australia,
is anything to go by, that is, meeting up with women who have been similarly
affected - it has been an answer to the puzzling reproductive and health
problems we have had . To not feel so incredibly alone with 'it'.
We look for support from you to disseminate this information. To discuss it
with fellow scientists, or the medical fraternity, to research and discuss,
whatever your capacity. I hope to develop open channels to communicate our
discovery and for you to discover what you can about our experience (and
your countries experience), reproductive biology, endocrine disruption or
similar, with others. Any help you can give, we will be very grateful to
have. If you want copies of the research papers we have - please correspond
with us.
Thank you
Tricia Gardner
24 Murray Street
YARRAVILLE VICTORIA 3013, AUSTRALIA
0011 61 3 96872844 (PHONE)
0011 61 3 98185421 (FAX)
datr@bigpond.com.au
www.users.bigpond.com/datr/index.html
OR
Tall Girls Inc.
PO BOX 7
CARNEGIE VICTORIA 3163, AUSTRALIA
21 SEPTEMBER 1998
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