How Does DES Affect Sons?

It is important for men who know or suspect they are DES sons to be aware of possible problems and know what to do about them. Although less research has been conducted on the consequences of DES exposure in males than in females, a number of concerns have been identified during the past 30 years. Much evidence suggests that the effects of DES exposure may become more pronounced during later years (i.e. middle age and beyond).

Not all DES exposed males have the same effects and some have no apparent health effects at all, so there are few generalizations that can be drawn for virtually every DES son in terms of health risks. However, some DES sons do face an increased risk for certain physical, psychological, or reproductive system abnormalities and disorders.

Unfortunately, many people, including doctors, do not know that about the discoveries of health effects in males exposed to DES. The information in this document is meant to provide a summary of known and speculative research about the effects of DES in males in order to facilitate further inquiry and accurate assessment of individuals' health conditions.

Probable/Established Problems

Epididymal Cysts: Epididymal cysts are the most common genital abnormality in DES sons. The epididymis is a structure on the back of each testicle where sperm are stored. Epididymal cysts are non-cancerous growths that feel like small lumps. They may disappear and recur over time. They do not need to be treated unless they are painful. However, report all lumps to your doctor and perform testicular self-exams on a monthly basis.

Testicular Abnormalities: Testicular problems in some men exposed to DES include both small (hypoplastic) testicles and undescended testicles (cryptorchidism). Males with undescended testicles have an increased chance of developing testicular cancer, even if their mothers didn't take DES. Some recent studies have suggested there is an increased risk of testicular cancer among DES exposed males.

Microphallus: An abnormally small penis (microphallus) occurs more often in DES sons than in other men.

Testicular varicoceles: Some studies have indicated that testicular varicoceles occur more often in DES sons than in other 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.

Hypospadias: Hypospadias is a condition where the opening of the penis is located on the under-surface of the penis rather than at the end.

Urethral meatal stenosis: This term refers to a narrowing of the opening of the penis.

Prostate enlargement, with or without Mullerian duct remnants (uterine precursor tissue). There is speculation that DES sons may be at increased risk of cancer of the prostatic utricle, which is most commonly identified by the presence of blood in the urine (hematuria).

Urinary Dyssynergia, an inability to adequately empty one's bladder, associated with an increased chance for bladder and kidney infections.

Gynecomastia, a benign enlargement of the male breast resulting from proliferation of the glandular component of the breast. It most commonly results from altered estrogen-androgen balance.

Fertility and Endocrine System Disorders

Fertility: Whether DES exposure in males is a direct cause of infertility is still somewhat debated. Some researchers have suggested that prenatal DES exposure in males is associated with decreased sperm counts and diminished semen quality, though it is not confirmed whether this results in decreased fertility levels.

Hormone and Endocrine Disorders: Some research has shown how DES exposure in males causes declines or imbalances in certain hormonal levels (particularly androgens such as testosterone and dihydrotestosterone) and impairment of the normal function of certain hormone receptors. This may be a factor in the development of hypogonadism (testosterone deficiency). It has been suggested that because DES is an "endocrine disruptor", prenatal DES exposure may alter the fragile balance between testosterone and estrogen levels in the developing male fetus, interfering with the normal biological processes of sexual differentiation and development in the brains and developing genitalia of males.

Other Reported Health Effects

Psychological Effects: Studies of the psychological effects of DES exposure are limited, but evidence has been found that DES is linked with increased likelihood of various psychological and neurological impairments. This includes Anxiety, Major Depressive Disorder, and other mood disorders. Other studies have recognized the potential for disturbances in psychosexual development and gender identity formation. Some of these conditions may be caused by long-term hormone imbalances induced by prenatal DES exposure.

Potential Immune System Effects: Some research has raised the possibility that DES exposure may lead to health conditions such as auto-immune system disorders, chronic fatigue, and allergies.

Intersexuality/Gender Dysphoria: Some researchers have recognized the potential that DES exposure in males may be a factor in the formation of ambiguous genitalia as well as other conditions associated with intersexuality and gender dysphoria in males.

What to Do if You Are a DES Son

• Tell your primary doctor, and be sure to learn about the most common symptoms associated with the conditions referenced on this page. You may also wish to be referred to a urologist or an endocrinologist for further consultation, but it is important that you locate specialists who are familiar with the effects of DES in males.
  
  
• Examine your testicles. Like all men, DES sons should get in the habit of examining their testicles once a month after a warm bath or shower. (link here to testicular exam info)
  
  
• Report any suspicious changes on or near your testicles (lumps or growths) to your doctor. Testicular cancer grows slowly and, if found early, can be fully cured.
  
  
• Get a yearly rectal exam to check for signs for prostate cancer if you are over 40. DES sons should have regular checkups to protect the health of their prostate. Your urologist should be aware that standard screening mechanisms for prostate cancer in DES sons may not be sufficient for ruling out evidence of prostatic abnormalities.
  
  
• See your doctor if you have concerns about your fertility, any difficulties with sexual function including erectile dysfunction or diminished libido, or if you are feeling depressed, anxious, or unusually tired or lethargic.
  
  
• Stay informed. Research on DES sons is now in progress, and new findings may apply to you. Join the DES Sons' Online Discussion Network for the latest information on DES research findings and sources for further reading. The address for the DES Sons' network is http://groups.yahoo.com/group/des-sons or to subscribe, send e-mail to DES-sons-subscribe@yahoogroups.com.
  It is suggested that DES sons also visit the Centers for Disease Control and Prevention DES Update web site for updated information on DES matters.

Thanks to Scott Kerlin of the DES Sons' Network for assistance with this information about the effects of DES on sons.