DES Sons Summary
of Scott Kerlin, Ph.D., DES Sons Discussion Network
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.
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
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,
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.
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.
Selected Sources for Further Reading
D. Lindsey Berkson, Hormone Deception. 2000. Chicago: Contemporary Books.
W.B. Gill. Effects on Human Males of In-Utero Exposure to Exogenous Sex Hormones. In Takao Mori, Ph.D. &
Hiroshi Nagasawa, Ph.D. (eds), Toxicity of Hormones in Perinatal Life. 1988. Boca Raton, FL: CRC Press (pp. 161-176).
Ruthann M. Giusti, MD; Kumiko Iwamoto, MD; and Elizabeth E. Hatch, Ph.D. Diethylstilbestrol Revisited: A Review
of the Long-Term Health Effects. Annals of Internal Medicine, Vol. 122, No. 10, 15 May 1995, pp. 778-788.http://info.med.yale.edu/chldstdy/plomdevelop/development/March99.html
A. Gorski. Development of the Cerebral Cortex: XV. Sexual Differentiation of the Central Nervous System. Journal of the American
Academy of Child and Adolescent Psychiatry, 37, No. 12, 1998, pp. 1337-1339. Online:
Melissa Hines. Abnormal Sexual Development and Psychosexual Issues. Bailliere’s
Clinical Endocrinology and Metabolism, Vol. 12, No. 1, April 1998, pp. 173-189.
Cynthia J. Laitman, Morten Jouler,
and Edward M. Messing. The Effects on Men of Prenatal Exposure to Diethylstilbestrol, in Larry I. Lipschultz & Stuart
S. Howard (eds), Infertility in the Male, 3rd Edition. 1997. St. Louis: Mosby (pp. 268-279).
McLachlan. Environmental Signaling: What Embryos and Evolution Teach Us About Endocrine Disrupting Chemicals. Endocrine
Reviews, Vol. 22 (3), pp. 319-341.
Edward J. Saunders. Physical and Psychological Problems Associated with Exposure to Diethylstilbestrol (DES).
Hospital and Community Psychiatry, Vol. 39, No. 1, pp. 73-77.
N.E.Skakkebęk, E.Rajpert-De Meyts and K.M.Main. Testicular Dysgenesis Syndrome: An Increasingly Common Developmental
Disorder with Environmental Aspects. Human Reproduction, Vol. No.5, July 2001, pp. 972.-978. Online: http://www.mindfully.org/Health/Testicular-Dysgenesis-Skakkebaek.htm
William C. Strohsnitter, Kenneth L. Noller, Robert N. Hoover, Stanley J. Robboy, Julie R.
Palmer, Linda Titus-Ernstoff, Raymond H. Kaufman, Ervin Adam, Arthur L. Herbst, and Elizabeth E. Hatch. Cancer Risk in Men
Exposed in Utero to Diethylstilbestrol. Journal of the National Cancer Institute, Vol. 93, No. 7, April 4, 2001, pp.
Toppari, Jorma, and Niels E. Skakkebaek. Sexual Differentiation and Environmental Endocrine Disruptors. Bailliere’s
Clinical Endocrinology and Metabolism, Vol. 12, No. 1, April 1998, pp. 143-156.
John Travis. "Modus Operandi of
an Infamous Drug (Diethylstilbestrol): Mutant Mice Provide Clues to how DES Wreaked Havoc in the Womb." Science News Online,
Vol. 155, No. 8, February 20, 1999, p. 124. Online: http://www.sciencenews.org/sn_arc99/2_20_99/bob2.htm
Jacobo Wortsman, MD, Ahmad Hamidinia, MD, and Stephen J. Winters, MD. Hypogonadism Following Long-term Treatment
with Diethylstilbestrol. The American Journal of the Medical Sciences, Vol. 297, No. 6, pp. 365-368.