What does DES exposure of mothers mean for their children and grandchildren?
 Sons and daughters of mothers who were exposed to DES may or may not suffer from certain effects. Grandchildren of women who were exposed to DES appear, according to information currently known, to have no effects.
What does DES exposure mean for DES daughters?
Abnormalities of the genital tract
Many, but not all, DES daughters have abnormalities in the shape of the vagina, the cervix, uterus and fallopian tubes, caused by exposure to DES. Some of these are harmless, such as an extra ridge of tissue on the cervix, a cervical hood or 'cock’s comb'. The uterus could be bi-cornuate or T-shaped, or uni-cornuate which means that it does not have the usual shape but may taper at the top. One or both fallopian tubes may not be formed or may be misshapen. These effects are usually benign, but they can have a definite impact on fertility, since conception may be possible but normal pregnancy is impeded.
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Fertility and pregnancy problems
Because of the abnormalities described above, DES daughters may be at a higher risk of infertility and/or problems such as ectopic pregnancy, miscarriage and premature labour. However, where these risks are identified they can be monitored, and some problems may be averted altogether.
Cell abnormalities
Many DES daughters have adenosis. This is a type of tissue not usually found in the vagina, which can cause discharge. Adenosis usually reverts to normal tissue by the age of 40 or so. DES daughters should, however, be monitored for the presence of adenosis as changes may indicate the beginnings of CCAC. But it is important that the examining gynaecologist appreciates that such adenosis is normal for a woman who has been exposed to DES in the mother's womb.
Recent studies have raised the possibility that the risk of breast cancer may be increased in DES exposed daughters as well as mothers. However, there is limited evidence to support this view.
What should DES daughters do?
- Have annual examinations, called DES examinations, of your vagina and cervix. A cervical smear alone is not adequate for a DES daughter as vaginal abnormalities may be missed.
- Examine your breasts regularly and have regular breast cancer screening.
- Be cautious about using hormonal treatments because of the possible cumulative effects of exposure to hormones. Some doctors think DES daughters should not take the combined contraceptive pill, or receive hormonal treatment such as medicines to reduce ovulation or for in vitro fertilisation. See DES: physical issues.
What does DES exposure mean for DES sons?
Sons of mothers exposed to DES: - May suffer genital malformations, including hypospadias where the urethra opens on the underside of the penis.
- some DES sons have low sperm counts
- DES sons should regularly examine their testicles. Undescended testes at birth are more common in DES sons, and should be brought down by age two. There have been no studies to assess any increased risk of testicular cancer.
- DES sons are also at risk of benign epididymal cysts.
Children of exposed daughters and sons: the granchildren
 This group is known as the third generation. At this time there is no evidence that the risk of birth defects, other abnormalities, or cancer is any greater for children of DES-exposed daughters and sons than for any other children. However, because of the possibility of premature birth for DES daughters, the concomitant risks of early births must be carefully monitored during pregnancy and labour.
This has been a source of concern for many DES mothers, some of whom are now entering grandmotherhood.
Pat is one such woman, who was given DES by a nurse who thought it would help her to abort. There is no such evidence, and Pat went to term.
Her daughter has just had her second child. Pat is absolutely thrilled, but she still has some reflective moments about DES.
How to address the problem - talking to family about DES
If you would like to talk to your mother about DES you may have to ask her several questions concerning whether you were exposed.
Michelle addressed the problem this way:
'Mum, you remember when you were trying to get pregnant did you go to your doctor to help you medically’.
Michelle’s mother answered that indeed DES was given as injections right through until, at three months, she discovered that she was pregnant. So, it seemed to Michelle’s mother that she had not taken anything during pregnancy because she stopped as soon as she discovered she was pregnant. She did not identify it as DES and like most women had not heard of DES at the time.
Your mother could also have been given something after a miscarriage, to regulate periods, to alleviate diabetes or to help with premature birth. DES actually did none of those things but the medical profession at the time believed in its efficacy.
If you are a mother who wishes to raise the subject, then do so. Knowing about DES can help adult children to take steps to protect their health.
Complete information helps people to make the right health care choices and receive proper care.
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