Although less is known about the possible health consequences for DES Sons, it is important for men who know or suspect they are DES Sons to be aware of possible concerns and know what to do about them. Most men exposed to DES before birth have no known increased risk of health problems. However, some DES Sons do face an increased risk for problems with their genital organs. These range from harmless irregularities to problems that may require medical treatment. Many people, including some doctors, do not know that men can be affected by DES exposure before birth.
- Epididymal Cysts – Epididymal cysts are the most common abnormality in DES Sons. Cysts (fluid filled sacs) on the epididymis are benign (non-cancerous) growths that feel like small lumps. They are usually painless but can occasionally be painful, depending on location. Epididymal cysts may disappear only to possibly recur again over time.
These cysts are common in all men, particularly after age 40. Because they are harmless, no treatment is generally needed for them. But, if an epididymal cyst grows and becomes uncomfortable, it can be surgically removed. Be sure to ask a doctor or urologist about any swelling around the scrotum or testes.
- Structural Changes – DES has been associated with extremely small testes and/or undescended testes. Men born with undescended testicles (even if their mother was not given DES) have an increased risk for developing testicular cancer. When found early, testicular cancer can generally be cured. All men should practice testicular self-exam (view exam instructions here or here) or http://tcrc.acor.org/tcexam.html regularly. A 2009 study also raises the question of whether some DES Sons were born with a small structural abnormality, such as a minor obstruction, that could explain what appears to be a greater risk for inflammation/infection of the testes.
Some, but certainly not all, DES Sons were born with microphallus (micropenis). This has no impact on fertility, although it can have psycho-social significance.
- Testicular varicoceles – Some studies have indicated that testicular varicoceles occur more often in DES Sons than in unexposed men. A varicocele is an irregularly swollen or varicose vein on the testicle. This enlarged vein produces a higher temperature than is normal for testicles, and –over a period of years – can lower the number of normal sperm as a result.
- Infertility – There is growing scientific evidence that DES Sons are slightly more likely than unexposed men to experience infertility. That means they were more likely than unexposed men to report spending at least a year trying to father a pregnancy with no success. But researchers with the on-going National Cancer Institute DES Follow-up Study say most DES Sons are able to father children. However, the scientists say they saw enough in their analysis to speculate that DES Sons may experience increasing infertility problems as they age. Clearly, this is something needing further study.
- Testicular Cancer (Possible) –No DES-specific testicular cancer has been found; however, research shows that congenital abnormalities such as undescended testicles predispose men to testicular cancer. Therefore, DES Sons, with a higher rate for such urogenital anomalies, might be considered as a high-risk group. All men should practice testicular self-exam (view exam instructions here or here) regularly.
- Prostate Cancer (Possible) - Since many DES Sons are just reaching the age when prostate cancer may occur, there have not yet been reports of an increased incidence of prostate cancer among DES Sons. That said, animal studies have pointed to the possibility of an increased risk for DES-exposed men, leading some researchers to speculate that DES Sons might be at higher risk and should pay attention to the possibility.
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.
Men traditionally are reticent to talk about the kind of highly personal issues that DES creates. It is often their mothers and wives who begin searching for information regarding exposure. DES Sons can experience the same anxieties, anger and relationship turbulence as DES Daughters. Experience shows that keeping lines of communication open can be helpful. Doing so with accurate and timely information regarding exposure is very useful. Taking action can reduce feelings of helplessness. Getting up on our soapbox now – joining DES Action can be one step toward healing. Members get new information throughout the year and feel good about doing something positive by supporting an organization actively pushing for more DES research.
Behavior and Sexual Issues – Questions have been raised regarding the possibility that DES might be linked to increased rates for such things as homosexuality, transgender and transexual issues. Even though animal studies point in that direction, so far no evidenced-based research in human populations has shown it to be true. We do occasionally hear from DES Sons with questions and concerns. Click here to read an especially compelling letter that came in to DES Action but note that some of the statements may not hold up to scientific scrutiny. Still, it sheds light on the painful lives of transgender individuals and their struggles. The late DES Action USA Co-founder Pat Cody comments on why it is difficult for researchers to study these questions and develop definitive answers.
There may be no obvious signs of DES exposure. Women who were given medication to prevent miscarriage from 1938-1971, in the United States – might have been prescribed DES. It was frequently used if a woman had a previous miscarriage, diabetes, or a problem pregnancy with bleeding, threatened miscarriage or premature labor.
Up until the mid to late 1950s some women were given DES shots. After that time, DES was given primarily in pill form, because both doctors and their patients found it much easier to handle the drug that way. Complicating identification of DES exposure is the fact that some prenatal vitamins contained DES and were prescribed even if there were no problems in the pregnancy.
As years go by, it becomes increasingly difficult to prove DES exposure. However, if you want to try, here are tips for doing a Medical Records Search.
Of note is that DES is an endocrine disrupting chemical. Those exposed to DES are highlighted as the "poster population" for what can happen when males are exposed to these chemicals before birth. An excellent explanation is in the June 2011 Redbook magazine - which specifically mentions DES Sons on page 2 of the article.