DES Sons

Males Whose Mothers Were Prescribed DES While Pregnant With Them

Navigating the Health Implications and Emotional Toll of Prenatal DES Exposure in Men

Health consequences for DES Sons are less well understood than those of DES Daughters. However, DES Sons should remain aware of this exposure as part of their health histories. A 1995 study quoted an earlier estimate that at least 1 million US men between the ages of 30 and 45 years were prenatally exposed to DES. 

A 1995 study quoted an earlier estimate that at least 1 million US men between the ages of 30 and 45 years were prenatally exposed to DES. This seems like an undercounting, given that 5 to 10 million pregnant women were prescribed the drug. Whatever the number, it is unfortunate that many people, including a large number of doctors, remain unaware that there were men affected by DES exposure before birth.

DES Action Information for and About DES Sons is a fact sheet that assists DES Sons in communicating medical information specific to them. It can be printed and shared with healthcare professionals.

Health Effects – Genital 

Most medical problems for DES Sons involve the genital organs, with issues ranging from harmless irregularities to conditions that may require medical treatment. 

A 2009 study (reviewed in DES Action VOICE Summer 2014) looked at data from the DES Follow-up Study to evaluate abnormal genital findings in DES Sons. Questionnaires were sent to three groups of men with likely intrauterine DES exposure, asking specifically about urogenital conditions, including penile, testicular, prostatic, and urethral abnormalities. Risks for adverse impacts were found to be highest for men who were exposed to DES before the 11th week of gestation and whose mothers had been given a cumulative DES dose of 5 grams or more during their pregnancy. The importance of the dose and timing of maternal exposure to the drug might explain why different studies have yielded conflicting results. 

Urogenital structural differences have been estimated to occur only in about 5% to 8% of the general male population. The studies quoting this statistic did not specifically include hypospadias or several of the other genital differences reported below. We include this information for general comparison purposes. 

  • Cryptorchidism and small testes

DES exposure has been associated with extremely small testes and undescended testes (cryptorchidism). Male infants born with undescended testicles (even if their mother was not given DES) are more likely to develop testicular cancer. When discovered early, testicular cancer can generally be cured. All men should practice testicular self-exams regularly, preferably beginning in adolescence.

  • Epididymal cysts

Epididymal cysts were found to be the most common genitourinary abnormality in DES Sons. These fluid-filled sacs on the epididymis, the tube located just behind each testicle in which sperm is stored, are benign (non-cancerous) growths that feel like small lumps. They are usually painless but can occasionally cause discomfort, depending on their location. 

Epididymal cysts may disappear, only to recur again over time. They are commonly seen in men, particularly after age 40. Because they are harmless, treatment is typically unnecessary. But, an epididymal cyst that grows and becomes uncomfortable may require surgical removal. Be sure to ask a doctor or urologist about any swelling or discomfort that occurs around the scrotum or testes.

  • Hypospadias 

Hypospadias is a congenital (present at birth) condition in which the urethral opening on the penis is in the wrong place, emerging somewhere along the shaft instead of at the tip. In many cases, this abnormality can be corrected with surgery. 

Research done in France studying hypospadias in the sons of DES Daughters (known as DES Grandsons) found a higher incidence of hypospadias in that generation of grandsons than in the general population. Although an increase was seen in male offspring directly exposed to DES prenatally (DES Sons), the number of participants was very small, making the relevance of these findings difficult to interpret.

Several subsequent studies have also shown an increased risk of hypospadias in the third generation of boys born to DES Daughters, but none have confirmed a clear association of this abnormality with direct prenatal exposure of male infants. See the article on DES Grandchildren for more information on this topic.

  • Inflammation/Infection

Researchers now believe that some DES Sons were born with a small structural abnormality, such as a minor obstruction, that could explain what appears to be their greater risk for testicular inflammation and infection.

  • Microphallus

Prenatal DES exposure has also been associated with an increased risk for a smaller-than-average penis. This finding has been found to have no impact on fertility, although it can carry psychosocial significance. Please note that we do not have access to the full study and are depending on the information given in the abstract. 

  • Testicular varicoceles

A varicocele is a complex of irregularly swollen or varicose veins in the scrotum. This abnormality produces a higher temperature than normal for the testicle and, as a result, can lower the number of normal sperm over the years. Some early studies in 1981 have indicated that testicular varicoceles occur more often in DES Sons than in unexposed men. However, data from a study conducted in 2009 showed no evidence of an increased risk of varicoceles in DES Sons. 

  • Testicular cancer

A 2019 meta-analysis published in the Journal of the National Cancer Institute Cancer Spectrum titled Systematic Review and Meta-analysis of Testicular Germ Cell Tumors Following In Utero Exposure to Diethylstilbestrol reviewed all of the previous research on the topic. The researchers found that the odds of testicular cancer were three times greater in DES Sons than in unexposed men.

According to the American Cancer Society, the risk of testicular cancer is 1 in 250 in the general population, so this means that 3 out of every 250 DES Sons could be affected. The authors of the meta-analysis concluded that prenatal exposure to DES and other chemicals like DES likely contributes to the development of testicular cancer cells in male individuals. For more information regarding their findings, read the article that covers this study in the VOICE Winter 2020.

 

Health Effects – General 

  • Infertility

Researchers with the ongoing National Cancer Institute DES Follow-up Study say that most DES Sons are able to father children. In fact, a 1995 follow-up study of DES Sons found “no impairment of fertility by any measure.” However, the scientists said they saw enough in their analysis to speculate that DES Sons may experience increasing infertility problems as they age. The researchers are continuing their investigation into this issue.

  • Prostate cancer (possible)

A recent study showed no increased incidence of prostate cancer among DES Sons. That said, animal research has pointed to the possibility of an elevated risk of prostate gland tumors with in utero estrogen exposure, leading some to speculate that DES Sons might be at higher risk and should pay attention to the possibility.

  • Cardiovascular disease and pancreatic disorders

DES studies continue with additional medical conditions now possibly linked to prenatal exposure. These conditions have been found to occur at higher rates for DES Sons and DES Daughters than those who were not exposed:

Specifics on the NCI DES Follow-up Study research findings are reviewed in a DES Action VOICE Spring 2013 newsletter article.

  • Scientists have seen mounting evidence that endocrine disruptors, of which DES is one, are implicated in increased risks for cardiovascular disease.

No special screenings or treatments have been identified for DES Sons, but they should be aware of potential risks and discuss any appropriate screenings with their doctors.

DES has been linked to several other conditions that may affect men but have only been studied in women. See the studies under the DES Daughters tab to learn more about these findings.

Sex, Sexuality, and Gender

Endocrine-disrupting compounds are being examined in studies looking at gender identity, but so far, there has been no evidence of a conclusive DES link. One confounding factor now under investigation is the layering of endocrine-disruptive exposures, both prenatally and perinatally. Researchers want to determine if there is an association and whether DES exposure is a cause or, perhaps when combined with other exposures, a trigger for variations.

Questions have been routinely raised in the DES community regarding the possibility that prenatal DES exposure may be linked to increased rates of homosexuality and transgender identity. Animal studies point in that direction, yet no evidence-based research in human populations has been able to confirm it. 

An article on DES and sexuality from the VOICE Spring 2003 newsletter describes what researchers saw in human studies. It reviewed a study published that year looking at the psychosexual identities of DES Daughters and Sons. No effect on sexuality from DES exposure was found.

However, the National Institute of Health DES cohort study more recently published a paper titled Gender Identity and Sexual Orientation Identity in Women and Men Prenatally Exposed to Diethylstilbestrol in the Archives of Sexual Behavior in January 2020. The researchers reviewed questionnaires from 2,220 DES Daughters and 933 DES Sons, with an average age for all participants of 63 years. They found that prenatal DES exposure was associated with differences in sexual orientation among women and possibly among men. DES-exposed women were less likely to identify as lesbian, while DES-exposed men showed no clear trend but possibly a slight increase in nonheterosexual identity. 

Until now, no credible studies have attempted to evaluate the DES LGBTQ+ community compared to those unexposed. The findings from this research shed a bit more light on this topic. This new study was covered in the VOICE Spring 2020. 

In a VOICE newsletter commentary, the late DES Action USA Co-founder Pat Cody examined why it is difficult for researchers to study behavioral and sexual questions and develop definitive answers. To understand the struggles faced by transgender individuals, read a letter that was sent to DES Action. But note that some statements may not hold up to scientific scrutiny. 

For more discussion and studies on DES exposure and human sexuality, sex, and gender, visit our LGBTQ+ page. 

Depression

A September 2019 study published in the journal Epidemiology surveyed nearly 5,000 DES-exposed and over 2,700 unexposed participants from the NCI’s DES Combined Cohort Follow-up Study. Among the women, 26% of DES Daughters and 23% of unexposed women reported depression, and 17% of both DES Sons and unexposed men reported depression. 

The researchers found no statistically significant increased risk of depression in DES Children, even when limited to those taking antidepressants. They controlled for various factors, including physical health problems, but not a family history of depression. 

Also noted was a weak link in women and men exposed to a low cumulative prenatal dose of DES, but among men, this was apparent only after accounting for other factors. Together, this research shows that a link between DES exposure and depression was not demonstrated, but it cannot be completely ruled out. Still, there is not enough evidence to suggest depression is any more likely in DES Daughters and Sons than in the general population.

Emotional Impacts

DES creates emotional trauma for all who come in contact with it: DES Mothers (and Fathers), DES Daughters, DES Sons, and DES Grandchildren.

Traditionally, men are reluctant to talk about the highly personal issues that DES exposure creates. It is often their mothers and wives who begin searching for information. DES Sons can have the same anxieties, anger, and relationship turbulence as DES Daughters. Experience shows that keeping lines of communication open can be helpful. And it is most useful to consider accurate and timely information regarding DES exposure and its potential effects. 

References

 

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