DES-Mother and DES-Daughter Relationship

Exposure to DES may reveal pre-existing difficulties from generation to generation

1996 Study Abstract

The psychological consequences resulting from the exposure to diethylstilbestrol (DES), a non-steroidal oestrogen, on the mother-daughter relationship are studied using semi-directive interviews with 43 daughters and 7 mothers treated with DES during their pregnancies.

Prenatal exposure to diethylstilbestrol and the mother-daughter relationship, US National Library of Medicine, European journal of obstetrics, gynecology, and reproductive biology, NCBI PubMed PMID: 8730622, 1996 Apr.

These women referred to gynaecological consultation for DES-related problems.

The daughters, exposed to DES during their foetal life, learned about DES after a pregnancy mishap (35% of the cases), or by accident (65% of the cases).

All of them were shocked when the existence of DES and its side effects were revealed to them.

Consequences on the mother-daughter relationship were

  • absent in 60% of the cases,
  • favourable in 20%,
  • and negative in 20%.

Five percent of the women showed hostility towards the medical practice, but 65% were not suspicious of the drugs administered to them during their pregnancies. For 64% of them, administration of DES to their mother had been kept secret. In 7 out of 50 cases, parents alone came for medical assistance in order to manage the secret.

Exposure to DES may reveal pre-existing difficulties not only between the mother and the daughter, but sometimes beyond from generation to generation.

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Childhood play behavior and adult gender-role behavior in DES-exposed women

US National Library of Medicine, Archives of sexual behavior

1992 Study Abstract

Data from lower mammals suggest a masculinizing or defeminizing influence of pre- or perinatal diethylstilbestrol (DES) exposure on various aspects of the sex-dimorphic behavior (including juvenile rough-and-tumble play) of genetic females.

Prenatal exposure to diethylstilbestrol (DES): childhood play behavior and adult gender-role behavior in women, US National Library of Medicine, Archives of sexual behavior, NCBI PubMed PMID: 1417473, 1992 Oct.

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However, three previous studies on childhood play and adult gender-role behavior in human females have led to ambiguous results. In a follow-up study of 60 women with prenatal exposure to DES and 26 controls, we used psychometrically well-designed multi-item scales based on self-report inventories for the assessment of these aspects of behavior.

No effects of DES could be demonstrated. We conclude that, at the doses studied, prenatal DES exposure in human females has not led to behavioral masculinization or defeminization of childhood play and adult gender-role behavior.

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Understanding sexual differentiation of the human brain

DES exposure associated with reduced hemispheric laterality and lowered spatial ability

1992 Study Abstract

Ten males exposed to diethylstilbestrol (DES), a nonsteroidal synthetic estrogen, during gestation were compared to their matched, unexposed brothers on measures of brain hemispheric specialization for processing nonlinguistic spatial information and cognitive abilities.

Effects of prenatal exposure to diethylstilbestrol (DES) on hemispheric laterality and spatial ability in human males, US National Library of Medicine, Hormones and behavior, NCBI PubMed PMID: 1563729, 1992 Mar.

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DES exposure was associated with reduced hemispheric laterality and lowered spatial ability.

These data provide direct evidence of a relationship between brain laterality, spatial cognitive ability, and prenatal exposure to hormones in human males. Further, the implications of these findings for understanding sexual differentiation of the human brain are discussed.

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Gender-related behavior in females following prenatal exposure to DES

Hormones and behavior, 1989

Study Abstract

Animal research has shown that diethylstilbestrol (DES) present during the sensitive developmental periods of the hypothalamus and adjacent areas of the brain affects the development of sex-dimorphic brain structures and subsequent behavior.

To test for corresponding behavioral effects in humans, 30 women with a history of prenatal DES exposure were contrasted with 30 unexposed women who had been referred to the same clinic for a colposcopic examination because of an abnormal Pap smear.

The development of gender-related behavior in females following prenatal exposure to diethylstilbestrol (DES), US National Library of Medicine, Hormones and behavior, NCBI PubMed PMID: 2606466, 1989 Dec.

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Gender-role behavior of childhood, adolescence, and adulthood was assessed by means of a semistructured interview, the Gender Role Assessment Schedule-Adult, and the Bem Sex Role Inventory. The mothers of these women were interviewed about their daughters with the “mother form” of the same interview schedule.

The results suggest that DES women show less orientation toward parenting than the controls. There were no consistent group differences in other domains of gender-role behavior.

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Depression and diethylstilbestrol exposure in women

image of depression in women

Major and recurrent depressions are likely to result from concern about reproductive and other gynecologic problems

1987 Study Abstract

Fifty women exposed to diethylstilbestrol (DES) in utero, 50 of their unexposed sisters (sister controls) and 43 women with abnormal Papanicolaou smears (population controls) were tested using the Diagnostic Interview Schedule to assess differences in depression and other kinds of psychologic impairment possibly associated with DES exposure.

Depression and diethylstilbestrol exposure in women, US National Library of Medicine, The Journal of Reproductive Medicine, NCBI PubMed PMID: 3430493, 1987 Nov.

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There were significant differences between DES-exposed women and their sisters in major depression and major recurrent depression. Papanicolaou controls were more depressed in comparison to sister controls.

However, there were no significant differences in depression between Papanicolaou controls and the DES exposed, suggesting that major and recurrent depressions are more likely to result from concern about reproductive and other gynecologic problems than from the hormonal effects of intrauterine exposure to DES.

Differences in amphetamine abuse/dependence were also noted between the DES exposed and the sister controls.

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Psychopathology in prenatally DES-exposed females

Current and lifetime adjustment

1987 Study Abstract

This report concerns the long-term effects of prenatal exposure to diethylstilbestrol (DES) on overall psychologic functioning in females.

Thirty DES-exposed women aged 17-30 years and 30 control women with a history of abnormal Pap smear findings were interviewed with the SADS-L and completed the SCL-90-R and the PRI-Q.

Psychopathology in prenatally DES-exposed females: current and lifetime adjustment, US National Library of Medicine, Psychosomatic medicine, NCBI PubMed PMID: 3575605, 1987 Mar-Apr.

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Both DES and PAP women showed elevated symptoms on the SCL-90-R in comparison to published norms and were similar to women with cancer, but their rates of psychiatric disorders (SADS-L/RDC) at the time of the evaluation did not differ from community norms. However, both groups met criteria for Major Depressive Disorder (lifetime) significantly above expectancy, and the DES women reported slightly more episodes than the control group. The DES women also had significantly more problems than the PAP control group in social relations with spouses and other significant persons.

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Sexual activity level and sexual functioning in women prenatally exposed to diethylstilbestrol

Could DES Daughters have difficulties in sexual desire and enjoyment?

1985 Study Abstract

Thirty women with a history of prenatal exposure to diethylstilbestrol (DES) underwent a detailed sexual history and were compared to a demographically similar sample of 30 women with a history of an abnormal Pap smear.

Sexual activity level and sexual functioning in women prenatally exposed to diethylstilbestrol, US National Library of Medicine, Psychosomatic medicine, NCBI PubMed PMID: 4070521, 1985 Nov-Dec.

Image credit Helen Taylor.

The DES women were found to have less well-established sex-partner relationships and less experience with child-bearing, to be lower in sexual desire and enjoyment, sexual excitability, and orgasmic coital functioning, but to be comparable (and low) with regard to such sexual dysfunctions as vaginismus and dyspareunia.

Both potential psychosocial and neuroendocrine explanations are discussed.

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Sexual orientation after prenatal exposure to Diethylstilbestrol

Sexual orientation image

DES Daughters tend to show increased bisexuality and homosexuality

Abstract

Thirty women aged 17 to 30 years with documented prenatal exposure to the nonsteroidal synthetic estrogen diethylstilbestrol (DES) were compared to thirty women of similar demographic characteristics from the same medical clinic who had a history of abnormal Pap smear findings.

Sexual orientation after prenatal exposure to exogenous estrogen, US National Library of Medicine, Archives of sexual behavior, NCBI PubMed PMID: 3977584, 1985 Feb.

Image credit gazeronly.

A subsample of the DES women were also compared to their DES-unexposed sisters. Sexual orientation in its multiple components was assessed by systematic semistructured interviews.

In comparison to both control groups, the DES women showed increased bisexuality and homosexuality. However, about 75% of the DES women were exclusively or nearly exclusively heterosexual.

Nonhormonal and hormonal interpretations of these findings are discussed.

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Management of DES-Exposed Patients : Psychological Support

Screening and Management of Diethylstilbestrol Exposed Offspring

Summary

Prenatal diethylstilbestrol (DES) exposure in pregnancy has been associated with adenocarcinoma of the vagina and/or cervix as well as teratogenic abnormalities of the genital tract in both female and male offspring. DES Action groups are alerting the public to the dangers inherent in being a `DES daughter‘ or a `DES son‘. Family physicians must be able to reassure those patients who are not DES offspring, manage those who are, and detect those who didn’t know they were. The screening and management of DES problems, including history-taking, physical examination, relevant laboratory exams and consultation for diagnosis and treatment of both male and female patients are discussed. In addition, psychological support, patient education, longterm follow up, the management of contraception and pregnancy in DES daughters, and infertility in DES sons are considered.

Management Of DES-Exposed Male Patients : Psychological Support

Screening and Management of Diethylstilbestrol Exposed Offspring, US National Library of Medicine, National Institutes of Health, The College of Family Physicians of Canada, NCBI PubMed PMC2153721, 1984 Aug; 30.

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Helping families cope with DES-induced abnormality and pathology involves dealing with the family’s and patient’s anger at the medical profession for having led them into this situation. The family doctor has to function in an agonized setting where the cardinal rule ‘first do no harm‘ has been violated.

It also involves helping assuage the mother’s guilt at having collaborated in a treatment which has brought hazard or harm to her children. She must be made to understand that the responsibility rests with the medical profession, one of whose members prescribed a treatment that was generally considered appropriate at the time. A good support for the patient and family is DES Action Groups which provide information and readily available self-help groups.

Where genital abnormality or genital surgery has led to sexual problems, the family physician may have to refer the patient to sexual counsellors and therapists with experience in sexual therapy and rehabilitation.

Conclusion

The seventeenth-century philosopher, Rene Descartes, called medicine “a science that was forced into practice too early“. Implications in some articles we have read in the public press are that doctors gave DES to pregnant women out of some combination of callousness, stupidity and monetary greed. In fact, doctors gave DES to pregnant women who were likely to suffer a spontaneous abortion because it was believed DES might prevent miscarriage.

In retrospect, however, it is important to try and understand why doubleblind studies done in the early 1950s, concluding that DES was ineffectual in maintaining pregnancies at risk, were largely ignored. One answer seems to be that physicians as a group rely too heavily on the pharmaceutical industry’s advertising and not firmly enough on objective research in evaluating the medications we use. The medical profession’s tragic experience with DES should lead us to constantly examine the process of drug evaluation and take steps to control the pharmaceutical industry’s influence on evaluative trials and the dissemination of drug information.

Reading the DES Action literature, one sees, understandably, a lot of anger towards the medical profession. However, despite this background of bitterness, one frequently hears DES patients’ unqualified expressions of appreciation and admiration for the doctors who are presently caring for them.

It is incumbent upon us not to neglect the detection and treatment of DES-induced abnormality and disease. The tools for this task are continual attention to the facts of DES-induced disease as they continue to emerge, and the two basic maneuvers of sound medicine: a good history and a thorough physical examination.

Michael Malus, Alex Ferenczy, 1984.

Download the full paper on NCBI.

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Depression and anxiety doubled in the DES-exposed offspring

A randomized double-blind controlled trial of the value of stilboestrol therapy in pregnancy: long-term follow-up of mothers and their offspring

Abstract

In the early 1950s, a randomized, double-blind, controlled trial of the value of prophylactic stilboestrol therapy given antenatally to reduce the incidence of late pregnancy toxaemia and to improve perinatal mortality was conducted at University College Hospital, London.

A randomized double-blind controlled trial of the value of stilboestrol therapy in pregnancy: long-term follow-up of mothers and their offspring, US National Library of Medicine National Institutes of Health, British journal of obstetrics and gynaecology, NCBI PubMed PMID: 6357269, 1983 Nov.

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Women expecting their first baby were allocated to one or other of two groups. Those in the stilboestrol group started treatment at the 12th week of pregnancy on average and received a mean dose of about 11.5 g of the drug while those in the control group received placebo tablets.

In spite of the fact that the original trial documentation was lost, it was possible to be fairly certain which was the treated group and follow-up data from 650 mothers and 660 offspring were obtained from death certificates, cancer registrations and questionnaires sent to general practitioners.

We found no indication of any harmful long-term effect of stilboestrol exposure during pregnancy on the mothers–in particular 10 out of 331 women in the untreated group and 9 out of 319 women in the treated group were found to have developed breast cancer.

Amongst the daughters, those in the treated group suffered an excess of minor benign lesions of the cervix uteri and an excess (not statistically significant) of unfavourable pregnancy outcomes. None of the daughters had developed clear cell adenocarcinoma of the vagina or cervix uteri.

Amongst the sons, we discovered no evidence of any significant excess of genital tract disorders or of impaired reproductive performance in the treated group but one son developed a (fatal) teratoma of the testis.

Unexpectedly, psychiatric disease (especially depression and anxiety) was reported by general practitioners about twice as often in the treated group offspring (sons and daughters) as in the untreated group. This result cannot be due to bias, and is unlikely to be due to confounding or chance, and may thus represent an adverse effect of exposure to stilboestrol in utero.

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