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DES Action Publications

DES Action publishes a newsletter twice a year for its members and other targeted groups and individuals. There is an information leaflet available which is funded and produced by the Health Promotion Unit of the Department of Health and posters from the same source. A detailed booklet for confirmed DES daughters is available on request. Audited annual accounts are also available

Newsletter - Winter 2001

Medical Reports - Reviewed by Pat Cody
Reproduced from VOICE by permission of DES Action USA

"Infertility among women exposed prenatally to diethylstilbestrol"
J.R.Palmer et al. American Journal of Epidemiology, Vol. 154, No. 4, 2001

In our Fall issue of the VOICE we reported on the abstract, or summary version, of this study. The abstract lacked the detailed information we now have from the publication of the entire report earlier this year.

This study collected data in 1994 on the fertility status of 1,753 DES daughters and 1,050 unexposed women. The median age of the women was 42 at that time. 24% of the exposed and 18% of the unexposed had never become pregnant. The researchers found that infertility in DES daughters was most often linked to uterine or tubal factors.

An interesting finding was that for the DES group, those exposed before 9 weeks of pregnancy had a never-pregnant rate of 30.2% and those first exposed later than 13 weeks of pregnancy, the lowest rate among this group, 20.5%. This fits with what we have learned from embryology, that the reproductive tract develops in the early weeks of fetal life, so that interference from DES could affect that development.

Reason for infertility among DES daughters
Tried to become pregnant for at least 12 months without success DES exposed Non-exposed
1,260 884
Had difficulty conceiving because of:
Uterine problem
Tubal problem
Hormonal/ovulatory problem
Endometriosis
"Other" problem
More than one type of problem
Unknown type

24
33
57
17
13
64
174

2
9
28
9
3
14
64

"Prenatal DES exposure: the continuing effects"
by Arthur Haney M.D., Director, Reproductive Endocrinology and Infertility, Dept. of Ob/Gyn, Duke University Medical Center, in OBG Management, October 2001.

With his many years of experience with DES daughters, Dr Haney reminds other physicians that "exposure to DES in utero may cause higher rates of spontaneous abortion, premature labor, and ectopic pregnancy. And since many exposed women are still of reproductive age, continued vigilance of these women is essential."

He points out that the uterine lining of a T uterus appears normal "which suggests that the fundamental change is in the underlying structure, i.e. fibromuscular, development of the uterus." Writing about prematurity, Dr. Haney notes that the rate of premature delivery ranges from 2.6 to 4.7 times higher for DES daughters. Those with a normally shaped uterus still have a greater risk for premature delivery. He cautions about using cerclage on every DES daughter to prevent early delivery, reporting that the vast majority of DES daughters can deliver viable infants. He informs readers that "Some second-trimester losses may occur in DES-exposed women because of incompetent cervices, while others are the result of premature labor. This is an important distinction, since the therapies employed in these conditions are very different, i.e., cerclage versus pharmacologic suppression of labor."

Ectopic (tubal) pregnancy rates for DES daughters "range from 3.7 to 8.6 times higher than in unexposed women….and "are not associated with a history of pelvic inflammatory disease (PID)." As for first-trimester pregnancy loss, he writes that "it has been observed repeatedly in women exposed prenatally to DES, with a relative risk in the range of 1.3 to 4.4."

Dr. Haney concludes his review with this statement: "Prenatal DES exposure can affect virtually the entire reproductive tract, including the vagina, cervix, uterus, fallopian tubes, ovaries, and mesonephric remnants. DES-related anomalies can affect multiple reproductive functions causing higher rates of spontaneous abortion, premature labor and ectopic pregnancy. A conservative approach is recommended when treating gynecologic and obstetric problems in this population, since the tissue response to conventional therapy may be different in these women."


"The preterm prediction study: toward a multiple-market test for spontaneous preterm birth"
by R.L. Goldenberg et al, American Journal of Obstetrics and Gynecology, September 2001.

This study is of interest to us because DES daughters have a greater risk for preterm birth than do unexposed women. While the women in this study were not identified as to DES status, the risk factors that are described will be of interest to our readers.

A number of potential markers for spontaneous preterm birth were studied. The authors report that the strongest markers - from tests done at 24 weeks - for delivery at less than 32 weeks were:

  • a positive cervical-vaginal fetal fibronectin test
  • a high percentile rating for a-fetoprotein and for alkaline phosphatase
  • a short cervix
Prediction is helpful in that the woman and her doctor are prepared. Other benefits of prediction have not been shown, the authors write, "principally because we have few, if any, effective interventions that can be used once high-risk status has been identified".


DES INTERNET LIST SERVS

Joining the list serv is a two-step process:

1) To join the DES Action Daughters listserv simply send an email to: DESactionDaughters-subscribe@yahoogroups.com. No need to put anything in the subject line of the email you send. Don't eve bother typing a message. By sending a blank note to the appropriate email address you have initiated the process. In a few minutes you'll get an email back from Yahoo!Groups- asking you to confirm your request to join the listserv. It offers you two ways to register for the DES Action listserv.

2) The easiest is to select option 2, which has you click "Reply" to the message you are reading, so you send the note back the same way you reply to any email. By sending your message back, you are confirming that, "yes", you want to join the listserv and the email address you are replying from is the one you want to use for this service.

Within several days, and probably sooner, you'll hear back from DES Action. After confirming your current membership status, the welcome letter will contain details on how to send messages to the listserv. Then you can participate fully in the dialogue!
Editorial

You will find included with this Newsletter a notice of our Annual General Meeting. We decided not to hold an AGM in 2001 because it would have been close in time to the 2002 AGM and we apologise to those of you who were expecting to receive a notice during the year. There is a lot of up-to-date information from the Washington Colloquium and from our meeting with the Minister for Health, Micheal Martin T.D. which will be discussed at the AGM so I urge you all to attend if you can. We really need to hear from our membership and this meeting provides the opportunity to do so. We also need some new faces for our Committee so please consider becoming a member, we only meet once a month so it is not a huge commitment. We meet in the offices of the National Women's Council which is near the Mont Clare Hotel.

The media coverage of the DES issue in April was still resulting in many inquiries to our information line through May, June and well into July. We discussed the implications of this with the Minister and one of the immediate results of our meeting with him is that his Department is funding the publication and dissemination of an up-dated and revamped information leaflet. There are other issues which we discussed and which will be followed up during the year. See you on February 9th!

Daphne Passmore.


Soy Formula and Cancer
Reprinted from VOICE, by permission of DES Action USA (#89 Summer 2001)

"Uterine adenocarcinoma in mice treated neonatally with genistein"
Retha Newbold et al, Cancer Research, 1 June 2001.

Discoveries of the effects of the synthetic estrogen DES on humans exposed in utero have opened the door to a wide range of scientific inquiry. Researchers have studied birds and fish with malformations and sterility after exposure to chemical pollutants like dioxin, compounds called xenoestrogens, i.e., having estrogen effects. A new area of inquiry centres on such "endocrine disrupters." This study field is that of phytoestrogen, or plants that have estrogen. John McLachlan, former science director of the National Institute of Environmental Health Sciences (NIEHS) and now director of the Tulane Centre for Bioenvironmental Research, has called estrogens the "earth mother" of all hormones, pointing out that plant life 4000 million years ago produced phytoestrogens.

Now his colleagues at the NIEHS, led by Retha Newbold, report that female mice treated neonatally with injections of genistein, the estrogen compound in soy, later developed the same uterine adenocarcinoma as do mice treated with DES. In fact, the incidence is higher, at 18 months, 35% of the genistein treated mice had uterine adenocarcinoma compared with 31% of the DES exposed mice. The genistein mice had the same reproductive abnormalities that have been found in DES mice: cystic ovaries, malformed oviducts, and an increase in multi-oocyte follicles (more than one egg in a follicle) that have been shown to be less fertile.

Theo Colborn and her colleagues, whose book Our stolen Future brought attention to environmental estrogens and disruption, maintains a web site (ourstolenfuture.org) to continue presenting research. Their review of the Newbold study emphasises: "This study makes two profoundly important points:

  1. It raises very large issues about the wisdom of basing infant formula on soy. Decades of research with DES showed time and again that effects first found in experiments with mice were then confirmed on studies on people.
  2. It confirms once again that estrogens at the wrong time in development can have extremely adverse effects, no matter whether they are from natural sources like soy, or synthetic sources like DES. What matters is whether they penetrate the chemical defence systems of the developing organisms at a vulnerable moment in development, one at which the developing organism would normally be using natural estrogen signals to guide development. At these moments, inappropriate estrogens can alter development by changing the intensity of the estrogen signal.
Newbold stated in the abstract that: "The developing fetus is uniquely sensitive to perturbation with estrogenic chemicals. The carcinogenic effect of prenatal exposure to diethylstilbestrol (DES) is the classic example. Because phytoestrogen use in nutritional and pharmaceutical applications for infants and children is increasing, we investigated the carcinogenic potential of genistein, a naturally occurring plant estrogen in soy, an experimental animal model previously reported to result in a high incidence of uterine adenocarcinoma after neonatal DES exposure…. At 18 months, the incidence of uterine adenocarcinoma was 35% for genistein and 31% for DES.

These data suggest that genistein is carcinogenic if exposure occurs during critical periods of differentiation. Thus the use of soy-based infant formulas in the absence of medical necessity and the marketing of soy products designed to appeal to children should be examined closely."


Newsletter Archive


Books

You may find the books listed below to be of value. The books can be ordered online from Amazon. If ordered via the links below, a small commission will be paid to DES Action Ireland.

Rose's Colors: A Mother's Journey by Elizabeth Levine Wandelmaier
Rose's Colors is the inspiring, true story of how one family came to love and accept their child with multiple disabilities. Rose was born 8 weeks premature to Elizabeth, a DES daughter. Rose's cerebral palsy and other disabilities dramatically altered life for this family. Rose's Colors is the return to a challenging but good life. Elizabeth is Co-Director of the DES Third Generation Network.
[Hardcover] [Paperback]


DES Stories : Faces and Voices of People Exposed to Diethylstilbestrol by Margaret Lee Braun, Nancy M. Stuart (Photographer), Theo, Phd Colborn
DES Stories is the first book of photos and stories of DES daughters, mothers, and sons with DES history, research, and resources. In photographic portraits and interviews, DES daughters, mothers, and sons tell, in their own voice, what it's like to be DES-exposed-stories that heal as they reveal.