From the 1940s to the 1970s, diethylstilbestrol (DES) was used in some pregnant women to prevent miscarriage. Many sons and daughters of women who used DES have developed abnormalities of the reproductive organs.
A woman who was exposed to DES in her mother's uterus may have abnormalities in her cervix, uterus, or vagina. A man who was exposed to DES in his mother's uterus may have abnormalities in the size of his penis, the opening of the urethra, and the testicles.
A woman who was exposed to DES in utero may have symptoms, including: vaginal spottingabnormal vaginal bleedingbleeding or spotting after intercourseabnormal PAP smear resultsabnormal vaginal dischargepainful intercourseunsuccessful penile penetration during the first sexual encounterabnormalities in the structure of the uterus, vagina, and cervix. Incompetent cervix, for example, may cause miscarriages and/or premature labor and delivery.
A man who was exposed to DES in utero may have: underdeveloped or undescended testicleshypospadias, a condition in which the opening to the urethra is located on the underside of the penisvaricocele, a condition in which the veins of the testicles are enlargeda small penismeatal stenosis, which is narrowing of the opening of the urethra on the end of the penisepididymal cysts, which are noncancerous tumors on the back of the testicles
Exposure to DES in the mother's uterus causes these problems in both men and women.
Since the sons and daughters of women who took DES were exposed to DES during fetal development, there is no known way to prevent the defects present at birth. Women exposed to DES in utero have a higher risk of developing certain rare cancers of the cervix and vaginal cancer. Therefore, more frequent PAP smears and colposcopy may be needed. A colposcopy uses a special scope to look at the cervix and vagina.
A son who was exposed to DES in utero should also have regular physical exams, including regular prostate and rectal exams. He should also perform regular monthly testicular self-examination, and report any suspicious changes or concerns to the healthcare provider.
Abnormalities of the cervix or vagina in women are usually seen on a pelvic exam done by a healthcare provider. PAP smears may be abnormal. If repeated PAP smears are abnormal, colposcopy is often done. A biopsy may also be done of the cervix and vagina to look for any cancerous changes.
Abnormalities of the penis, testicles, or urethra in men are generally seen on physical examination.
If a DES-exposed woman becomes pregnant, she should be watched for any signs of problems. These may include miscarriage, ectopic pregnancy, or premature labor.
A DES-exposed man is at risk for infertility, which may be caused by undescended testicles. He may also develop epididymal cysts, or noncancerous growths on the back of the testicle.
DES exposure affects only the offspring of the particular pregnancy in which the mother was given the medication. DES did not cause similar disorders in the mother. The disorders cannot be passed to others by sexual contact, and will not be passed to children of DES-exposed parents.
A cervix or vagina abnormally shaped by DES cannot be corrected by surgery.
If the vagina has a septum wall, the septum can be removed easily in an outpatient procedure.
If the woman has a cervix that begins to prematurely dilate or open during pregnancy, a cervical cerclage may be used to suture the cervix closed in an attempt to prevent preterm labor and delivery.
A woman with cancer of the cervix or vagina may need radical hysterectomy to remove the uterus, ovaries, and cervix, or a vaginectomy to remove the vagina. Radiation therapy may be performed to treat the cancer.
Surgery to reposition undescended testicles or to repair a hypospadias may be needed in a man.
By itself, in utero exposure to DES does not cause side effects in the offspring later in life. But if the DES has resulted in cervical, vaginal, or testicular cancer, surgical, radiation, and chemotherapytreatments for the cancer each have different side effects.
Surgery can be complicated bleeding, infection, and allergic reaction to the anesthestic. Chemotherapy may cause stomach upset, hair loss, and decreased resistance to infection.
If a DES-exposed woman becomes pregnant, her pregnancy will be considered high risk and she will be closely monitored. Surgery may be needed for more serious recurrent symptoms, infertility, or cancer. Recovery from surgery may be a few days to several weeks depending on the type of surgery done.
Men and women who were exposed in utero to DES should have yearly examinations to watch for serious complications such as cancer. Any new or worsening symptoms should be reported to the healthcare provider.
Maternity and Gynecological Care: The Nurse and the Family, Bobak et al., 1989
Understanding Your Body, Stewart et al., 1987