A focus group study of DES daughters: implications for health care providers

DES-victims distrust of the medical profession, Psycho-oncology, 2000

image of doctors-and-DES
This 2000 study showed DES Daughters felt that physicians lacked information about the long-term health effects of DES exposure and as a result did not give them accurate information. Furthermore, they felt that physicians were dismissive of their concerns and often gave what they felt to be false reassurances.

2000 Study Abstract

A focus group study of women exposed to diethylstilbestrol (DES) in utero (DES daughters) was conducted to gain understanding about exposure to this drug from a patient perspective.

  • Focus group participants reported that learning about their DES exposure was devastating; they experienced
    • strains in their family relationships,
    • emotional shock,
    • a feeling that their health concerns were not appreciated by others
    • and, to some degree, a sense of social isolation.
  • Although many were aware of the need for special gynecological exams and high-risk prenatal care, they were frustrated by what they felt was a lack of reliable and clear information about the effects of DES exposure.
  • Most expressed questions and anxiety about their health.
  • Many found their communication with physicians about their DES exposure unsatisfying. They felt that physicians lacked information about the long-term health effects of DES exposure and as a result did not give them accurate information. Furthermore, they felt that physicians were dismissive of their concerns and often gave what they felt to be false reassurances. Consequently, the women developed an enduring distrust of the medical profession.

The results of the study suggest implications for the delivery of health care to DES daughters.

Sources and more information
  • A focus group study of DES daughters: implications for health care providers, Psycho-oncology, NCBI PMID: 11038482, 2000 Sep-Oct.
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Hormonal Chaos

Scientific and Social Origins of the Environmental Endocrine Hypothesis

Hormonal-Chaos book cover image
A detailed description by a scientific and policy insider of an emerging theory and the response of the scientific and legislative communities.

The broader environmental endocrine hypothesis (EEH), is the subject of Hormonal Chaos, by Sheldon Krimsky, 2000. The premise behind the EEH is that chemicals mimicking endocrine hormones can bind to receptors and thus can cause health problems in humans as well as other animals. Krimsky shows how this hypothesis first developed within the scientific community, in large part as a result of the persistence and insight of Theo Colborn. While working for the nonprofit Conservation Foundation in the 1980s, Colborn formulated the EEH, linking together evidence from several disparate sources: deleterious effects on wildlife exposed to pesticides, defects in babies whose mothers took the estrogen substitute diethylstilbestrol (DES) and controversial claims that human sperm is declining in quantity and quality.

Sources and book reviews

  • Hormonal Chaos: The Scientific and Social Origin of the Environmental Endocrine Hypothesis, NCBI PMC1118410, British Medical Journal; 321(7259):516, BMJ 2000 Aug 19.
  • The Case of the Deformed Frogs, americanscientist, July-August 2000.
  • Amazon customer reviews.
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Incidence of squamous neoplasia of the cervix and vagina in DES-exposed daughters

Association between in utero DES exposure and high-grade squamous neoplasia

2000 Study Abstract

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The 2000 study findings support an association between in utero DES exposure and high-grade squamous neoplasia

Women exposed to diethylstibestrol (DES) in utero are known to have an excess risk of clear cell adenocarcinoma of the vagina and cervix, in addition to vaginal epithelial changes, but the effect on the incidence of squamous neoplasia is uncertain. This study evaluated the long-term risk of developing high-grade squamous neoplasia of the genital tract among women exposed prenatally to diethylstilbestrol.

A cohort comprising 3899 DES-exposed and 1374 unexposed daughters was followed for thirteen years (1982-1995) for pathology-confirmed diagnoses of high-grade squamous neoplasia. A pathologist blinded to exposure status reviewed seventy-seven percent of cases. Poisson regression analysis was used to compute relative risks (RR) and 95% confidence intervals (CI) controlling for age, calendar year, screening history and other covariates.

The RR (95% CI) among DES-exposed versus unexposed, based on 111 cases of high-grade disease, was 2.12 (1.19-3.77). Adjustment for screening history had little effect, but when the analysis was restricted to a group highly screened before 1982, the risk was reduced. Risk estimates were higher among women exposed earlier in gestation; the RR (95% CI) for exposure within 7 weeks of the last menstrual period was 2.82 (1.43-5.53).

The findings support an association between in utero DES exposure and high-grade squamous neoplasia, although a role for more intensive screening among DES-exposed women in the production of this excess could not be completely ruled out..


  • Incidence of squamous neoplasia of the cervix and vagina in des-exposed daughters, NCBI, PMID: 11018391, Ann Epidemiol. 2000 Oct 1;10(7):467. Full text link.
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Proliferative Lesions and Reproductive Tract Tumors in Male Descendants of Mice exposed to DES

Increased incidence of proliferative lesions of the rete testis and tumors of the reproductive tract observed in DES lineage mice, apparently transmitted to subsequent generations


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Increased susceptibility to tumor formation is apparently transmitted to subsequent generation.

Prenatal exposure to Diethylstilbestrol (DES) is associated with reproductive tract abnormalities,  subfertility and neoplasia in experimental animals and humans. Studies using experimental animals suggest that the carcinogenic effects of DES may be transmitted to succeeding generations. To further evaluate this possibility and to determine if there is a sensitive window of exposure, outbred CD-1 mice were treated with DES during three developmental stages: group 1 was treated on days 9-16 of gestation (2.5, 5 or 10 microg/kg maternal body weight) during major organogenesis; group II was treated once on day 18 of gestation (1000 microg/kg maternal body weight) just prior to birth; and group III was treated on days 1-5 of neonatal life (0.002 microg/pup/day). DES-exposed female mice (F(1)) were raised to maturity and bred to control males to generate DES-lineage (F(2)) descendants. The F(2) males obtained from these matings are the subjects of this report; results in F(2) females have been reported previously [Newbold et al. (1998) CARCINOGENESIS:, 19, 1655-1663]. Reproductive performance of F(2) males when bred to control females was not different from control males. However, in DES F(2) males killed at 17-24 months, an increased incidence of proliferative lesions of the rete testis and tumors of the reproductive tract was observed. Since these increases were seen in all DES treatment groups, all exposure periods were considered susceptible to perturbation by DES. These data suggest that, while fertility of the DES F(2) mice appeared unaltered, increased susceptibility for tumors is transmitted from the DES ‘grandmothers’ to subsequent generations.

  • Proliferative lesions and reproductive tract tumors in male descendants of mice exposed developmentally to diethylstilbestrol, NCBI, PMID: 10874014, 2000 Jul;21(7):1355-63.
  • Full text – Carcinogenesis Volume 21, Issue 7Pp. 1355-1363, OxfordJournals, 21/7/1355.long 2000.
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IntraUterine Exposure to DiEthylStilbestrol: long-Term Effects in Humans

APMIS : acta pathologica, microbiologica, et immunologica Scandinavica, Swan SH, Dec 2000


Intrauterine exposure to diethylstilbestrol: long-term effects in humans
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DES is the most carefully scrutinized EDC and its history provides valuable insights into the current evaluation of less well-studied EDCs. This review summarizes the health effects of prenatal exposure to diethylstilbestrol (DES) and emphasizes the role of DES as the first endocrine disrupting chemical (EDC). Vaginal clear cell adenocarcinoma (CCAC), the most severe consequence of prenatal exposure to DES, affected only 0.1% of exposed females, while the far more prevalent teratogenic and reproductive effects of DES were only discovered when DES daughter were screened for CCAC. Initial studies, conducted before most DES daughters had tried to conceive, examined vaginal cancer and vaginal, cervical and uterine abnormalities. Subsequently, several controlled studies demonstrated the increased risk of adverse reproductive outcomes in DES daughters. While most DES daughters can eventually experience a live birth, this is less likely in women with genital tract abnormalities, in whom there is a two-thirds chance that each pregnancy will be unsuccessful. In DES sons, who have been far less studied, results suggest male reproductive toxicity, but are less consistent. The importance of dose and gestational age at initial exposure are discussed, and the implications of DES findings for the evaluation of risks from current EDCs emphasized.

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Continued follow-up of Pregnancy Outcomes in DiEthylStilbestrol-exposed Offspring

Pregnancy outcomes in DES-exposed women are worse than those in unexposed women

2000 Study Abstract

Continued follow-up of pregnancy outcomes in diethylstilbestrol-exposed offspring
Pregnancy outcomes in DES Daugters are worse than those in unexposed women

To evaluate long-term pregnancy experiences of women exposed to diethylstilbestrol (DES) in utero compared with unexposed women.

This study was based on diethylstilbestrol-exposed daughters, the National Collaborative Diethylstylbistrol Adenosis cohort and the Chicago cohort, and their respective nonexposed comparison groups. Subjects who could be traced were sent a detailed questionnaire in 1994 that contained questions on health history, including information on pregnancies and their outcomes. We reviewed 3373 questionnaires from exposed daughters and 1036 questionnaires from unexposed women.

The response rate was 88% among exposed and unexposed women. Diethylstilbestrol-exposed women were less likely than unexposed women to have had full-term live births and more likely to have had premature births, spontaneous pregnancy losses, or ectopic pregnancies. Full-term infants were delivered in the first pregnancies of 84.5% of unexposed women compared with 64. 1% of exposed women identified by record review (relative risk [RR] 0.76, confidence interval [CI] 0.72, 0.80). Preterm delivery of first births occurred in 4.1% of unexposed compared with 11.5% of exposed women, and ectopic pregnancies in 0.77% of unexposed compared with 4.2% of exposed women. Spontaneous abortion was reported in 19.2% of DES-exposed women compared with 10.3% in control women (RR 2.00, CI 1.54, 2.60). According to complete pregnancy histories (many women had more than one pregnancy), preterm births were more common in DES-exposed women (19.4% exposed versus 7.5% unexposed (RR 2.93 CI 2.23, 3.86). Second-trimester spontaneous pregnancy losses were more common in DES-exposed women (6.3% versus 1.6%; RR 4.25, CI 2.36, 7.66). More first-trimester spontaneous abortions occurred in DES-exposed women than in controls (RR 1.31, CI 1.13, 1.53), and DES-exposed women had at least one ectopic pregnancy more often than unexposed women (RR 3.84, CI 2.26, 6.54).

Pregnancy outcomes in DES-exposed women were worse than those in unexposed women.

Sources: Continued follow-up of pregnancy outcomes in diethylstilbestrol-exposed offspringNCBI, Dr Herbst A, Oct 2000 – full PDF.

Sadly for many DES daughters having their own children is not possible! Many of us who have experienced miscarriages, want to have kids but are struggling or unable to… Read more about DES pregnancy risks – our posts tagged pregnancy.

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