2003 Recommendations for the Identification and Management of DES-Exposed Individuals

It is clear that DES has long-term effects that may develop over time

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The health effects of DES exposure that may impact DES-exposed persons as they age are unknown; therefore, it is essential that health care providers continue to identify persons exposed to DES and continue to offer increased surveillance. Photo by NEC Corporation of America.

Abstract

Diethylstilbestrol (DES) update: recommendations for the identification and management of DES-exposed individuals, Journal of midwifery women’s health, NCBI PMID: 12589302, 2003 Jan-Feb.

Diethylstilbestrol (DES) was etiologically linked to clear cell adenocarcinoma of the vagina in 1971.

This 2003 article reviews on-going research and emerging information relevant to DES-related health risks, thereby enabling women’s health care providers to maintain an evidence-based practice for their DES-exposed patients.

To accomplish these goals, the Center for Disease Control and Prevention (CDC) has initiated a national education campaign. This article describes the reasons for this new initiative, the target audiences, the DES historical framework (including major studies and findings), and populations that are affected. Clinical steps for the identification and management of the DES-exposed individual and resultant implications for midwifery and women’s health practices are reviewed.

Overview

  • Introduction
  • Adenocarcinoma and Cervical Cancer
  • Other Cancers
  • Anatomic Abnormalities
  • Pregnancy Outcomes
  • Effects of DES on Sons Exposed in Utero
  • Gynecologic Care for DES Mothers
  • Diagnostic Procedures Used to Assess Adenosis in DES Daughters
  • Preconception Care for Women Exposed to DES in Utero
  • Obstetric Care of Women Exposed to DES in Utero
  • Hormone Replacement Therapy
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Diethylstilbestrol Research – National Cancer Institute

NIH Research on the Health Effects of DES, 2011

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Click image above to download PDF (218 kb).

NIH Research on the Health Effects of Diethylstilbestrol
The Office of Research on Women’s Health, August 2011

The effects of diethylstilbestrol (DES) on the health of men and women and their offspring have long been a research focus at the National Institutes of Health (NIH). This 2011 report is an overview of NIH research related to DES that is primarily conducted or supported by the National Cancer Institute (NCI) and the National Institute of Environmental Health Sciences (NIEHS).

Summaries of DES research funded by NCI and NIEHS for FY2010 are included in this report, which will be posted on the ORWH website.

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DES (Diethylstilbestrol) Resource Guide 2003

View or download the 2003 print version of CDC’s DES Update for you, your family, and your health care provider

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Click image above to download PDF (2.5 MB).

CDC’s DES Update, 2003

Here you can view or download the print version of CDC’s DES Update for you, your family, and your health care provider.

This includes the DES Self-Assessment Guide.

All downloads are available in the Adobe® Portable Document Format (PDF). You will need the free Adobe Acrobat Reader plug-in to view and print these files.

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Psychosexual characteristics of men and women exposed prenatally to Diethylstilbestrol

DES exposure possible effects on psychosexual characteristics remain largely unknown

DES Follow-up Study Summary

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These 2003 study findings provide little support for the hypothesis that prenatal exposure to DES influences the psychosexual characteristics of adult men and women.

Animal studies suggest that estrogen affects the developing brain, including the part that governs sexual behavior and right and left dominance. We examined the potential impact of prenatal Diethylstilbestrol (DES) exposure on these characteristics in 2,684 men and 5,686 women participating in the NCI DES Follow-up Study.

Information on marital status, sexual behavior, and handedness was reported by subjects on a questionnaire. Responses indicated that DES neither influenced sexual behavior nor resulted in an increased likelihood of homosexual contact. In sons, DES was unrelated to the likelihood of ever having been married or of having a same-sex sexual partner in adulthood, age at first intercourse and number of sexual partners. DES Daughters were slightly more likely than unexposed women to have ever been married but were less likely to report having had a same-sex sexual partner, having had their first sexual intercourse before age 17 and to having had more than one sexual partner.

DES Daughters were just as likely as unexposed women to be left-handed. DES Sons were slightly more likely to be left-handed than unexposed men. Overall, about 17% of women reported a mental illness, but we found no evidence that it was more frequent in the exposed than the unexposed women. Mental illness was not assessed in the men.

2003 Study Abstract

BACKGROUND:
Between 1939 and the 1960s, the synthetic estrogen diethylstilbestrol (DES) was given to millions of pregnant women to prevent pregnancy complications and losses. The adverse effects of prenatal exposure on the genitourinary tract in men and the reproductive tract in women are well established, but the possible effects on psychosexual characteristics remain largely unknown.

METHODS:
We evaluated DES exposure in relation to psychosexual outcomes in a cohort of 2,684 men and 5,686 women with documented exposure status.

RESULTS:
In men, DES was unrelated to the likelihood of ever having been married, age at first intercourse, number of sexual partners, and having had a same-sex sexual partner in adulthood. DES-exposed women, compared with the unexposed, were slightly more likely to have ever married (odds ratio [OR] = 1.1; confidence interval [CI] = 1.0-1.4) and less likely to report having had a same-sex sexual partner (OR = 0.7; CI = 0.5-1.0). The DES-exposed women were less likely to have had first sexual intercourse before age 17 (OR = 0.7; CI = 0.6-0.9) or to have had more than one sexual partner (OR = 0.8; CI = 0.7-0.9). There was an excess of left-handedness in DES-exposed men (OR = 1.4; CI = 1.1-1.7) but not in DES-exposed women. DES exposure was unrelated to self-reported history of mental illness in women.

CONCLUSION:
Overall, our findings provide little support for the hypothesis that prenatal exposure to DES influences the psychosexual characteristics of adult men and women.

Sources

  • Psychosexual characteristics of men and women exposed prenatally to diethylstilbestrol,NCBI, PMID: 12606880, Epidemiology. 2003 Mar;14(2):155-60.
  • NCI, DES Follow-up Study Published Papers.
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Ovarian Carcinoma in an Adolescent with TransGenerational Exposure to DiEthylStilbestrol

More transgenerational health risks posed by DES exposure

Abstract

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DES granddaughters with persistent abdominal pain even during childhood may need evaluation for genital tract abnormalities.

Small cell carcinoma of the ovary is rare in adolescence. The etiology of such tumors is unknown. Several reports suggest that transgenerational exposure to Diethylstilbestrol (DES) may have deleterious effects on the genitourinary tract.

The authors describe a 15-year-old girl with small cell carcinoma of the ovary whose maternal grandmother had been taking DES while she was pregnant with the patient’s mother.

This case, while anecdotal, suggests that a transgenerational history of DES exposure should be noted, and that granddaughters with persistent abdominal pain even during childhood may need evaluation for genital tract abnormalities.

Sources:
  • Ovarian carcinoma in an adolescent with transgenerational exposure to diethylstilbestrol, NCBI, PMID: 12902917, 2003 Aug;25(8):635-6.
  • Full text – Clinical and Laboratory Observations Volume 25 – Issue 8, Lippincott Williams & Wilkins, pp 635-636 2003.
  • Full text – A case of small cell carcinoma of the ovary hypercalcemic variant in a teenager, ScienceDirect, S2211338X12000622 2012.
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There was NO Benefit with the Use of Diethylstilbestrol in preventing Miscarriages

More the opposite: DES-exposure in utero led to increased rate of miscarriage and preterm birth

Abstract

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Diethylstilbestrol usage is now obsolete in modern obstetrics practice. The review is historical to buttress the need for adequate and rigorous research into the use of drugs in pregnancy and ensure that they do more good than harm before being introduced for consumption.

Oestrogen supplementation, mainly diethylstilbestrol, for preventing miscarriages and other adverse pregnancy outcomes

BACKGROUND:
Laboratory evidence in the 1940s demonstrated a positive role of placental hormones in the continuation of pregnancy. It was suggested that diethylstilbestrol (DES) was the oestrogen of choice for prevention of miscarriages. Observational studies were carried out with apparently positive results, on which clinical practice was based. This led to a worldwide usage of diethylstilbestrol despite controlled studies with contrary findings.

OBJECTIVES:
To determine the effects of antenatal administration of oestrogens, mainly diethylstilbestrol, on high risk and unselected pregnancy as regards miscarriages and other outcomes.

SEARCH STRATEGY:
We searched the Pregnancy and Childbirth Group Specialised Register of controlled trials in November 2002.

SELECTION CRITERIA:
Randomised and quasi-randomised trials were included.

DATA COLLECTION AND ANALYSIS:
Both reviewers extracted data from the studies identified that met the selection criteria, and the data were analysed using the RevMan software.

MAIN RESULTS:
Miscarriage, preterm labour, low birthweight and stillbirth or neonatal death were not positively influenced by the intervention (diethylstilbestrol) as compared to the control group. Diethylstilbestrol in utero exposure led to increased rate of miscarriage and preterm birth. There was also an increase in the numbers of babies weighing less than 2500 grams. The maternal outcome in terms of pre-eclampsia was not influenced. Exposed female offsprings have a non-significant trend towards more cancer of the genital tract and cancer other than of the genital tract. Primary infertility, adenosis of the vagina/cervix in female offsprings, and testicular abnormality in male offsprings were significantly higher in those exposed to diethylstilbestrol before birth.

REVIEWER’S CONCLUSIONS:
There was no benefit with the use of diethylstilbestrol in preventing miscarriages. Both short and long-term adverse outcomes in exposed offsprings were demonstration of the harm that this intervention caused women and their offspring during its usage.

Sources
  • NCBI, Oestrogen supplementation, mainly diethylstilbestrol, for preventing miscarriages and other adverse pregnancy outcomes, PMID: 12918007, 2003;(3):CD004353.
  • The Cochrane Library, Full Article, DOI: 10.1002/14651858.CD004353, 21 JUL 2003 – PDF
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