DES: Exposure Risk and Consequences

Attention: If you were born between 1938 and 1971, or if you were pregnant during this time the information that follows could have a profound impact on your health.

Did your mother take "vitamins" during her pregnancy? Of course, all women should take good prenatal vitamins during pregnancy. But many women who were pregnant between 1938 and 1971 took vitamins that were not vitamins at all. Physicians often told women they were taking vitamins when what they were really taking was diethystilbestrol, more commonly referred to as DES.

DES is a synthetic estrogen that was given to millions of pregnant women during these years because the medical profession believed it would help prevent miscarriage and insure a healthy full term pregnancy. A 1957 advertisement claimed desPLEX® would "prevent ABORTION, MISCARRIAGE and PREMATURE LABOR…recommended for routine prophylaxis in ALL pregnancies…" This was only one of numerous brand names that DES (diethystilbestrol) was sold under.

DES did not work. In fact, the unfortunate use of this drug has resulted in severe risks and consequences to the health of many of the women who took the drug, as well, the daughters and sons whom they bore.

Women who were pregnant, and daughters and sons who were born during these years need to understand the risks that they may face because of this exposure before birth. Special health care may be required for some individuals to monitor for possible risks that include cancer, and infertility, as well as other conditions.

Resources and support groups are available to help those who were exposed to DES. It is important for everyone born during these years to find out whether their mother was given these drugs during pregnancy. Often this is difficult to find out because of the number of years that have passed; however it is possible to get these records, if you understand how to do it and where to look.

I have heard that some women who were pregnant between 1938 and 1971 were given a drug to prevent miscarriages that is now known to cause cancers. How do I know if I was exposed to the drug?

Many people do not know that they were exposed to DES. Mothers may not have known they were taking DES or remember the kinds of medication they were given when they were pregnant. Some prescription vitamins included DES.

WHAT TO DO

Women Who Might Have Taken DES

If you remember taking any medicine during pregnancy, try to get your medical records.

Daughters and Sons

· Ask your mother (or other relatives who might know your mother's pregnancy history):

· Did you (my mother) take any medications during pregnancy?

·Did you (my mother) have problems during any pregnancy, such as bleeding, miscarriage, premature birth, or diabetes? (If so, there is an increased possibility that your mother was given DES).

· Find out if your mother can get her medical records to see if she took DES. If not, perhaps you can.

What are the names of the products I (or my mother) may have taken during pregnancy that contained DES or DES-like compounds?

Following are some names under which DES and other Nonsteroidal Estrogens have been sold in the United States:

Nonsteroidal Estrogens

Benzestrol, Diphosphate, Hexoestrol, Oestromon, Stilpalmitate, Chorotrainisene, Macrocyte, Diethylstilbestrol, Hi-Bestrol, Orestol, Stiphostrol, Comestrol, Dipropianate, Menocrin, Pabestrol D., Stilronate, Cyren, Diethlstilbenediol, Meprane, Restrol, Stilrone, Cyren B., Digestil, Mestilbol, Stil-Rol, Stils, Delevinal, Domestrol, Mikarol, Stilbal, Synestrin, DES, Estilben, Mikarol forti, Stilbestrol, Synestrol, DesPlex, Estrobene, Milestrol, Stilbestronate, Synthoestrin, Dibestil, Estrobene DP, Monomestrol, Stilbetin, Valestril, Diestryl, Estrosyn, Neo-Oestrano I, Stilbinol, Willestrol, Dienestrol Fontal, Neo-Oestranol II, Stilbestroform, Dienoestrol, Gynben, Nulabort, Stilboestrol, Dipalmite, Gyneben, Oestrogenine, Stilboestrol DP, Diethlstilbestrol Palestrol, Hexestrol, Oestromenin, Stilestrate

Nonsterodial Estrogen-Androgen Combinatons:

Amperone, Di-Erone, Eston, Metystil, Teserene, Tylandril, Tylosterone

Nonsteroidal Estrogen-Progesterone Combination:

Progravidium

Vaginal Cream Suppositories w/Nonsteroidal Estrogens:

AVC Cream w/Dienestrol, Dienestrol Cream

What kind of health problems can women and children have if they were exposed to DES ?

WOMEN WHO TOOK DES

Women who took DES are advised to pay particular attention to their breast care because they may have a small increase in their risk of breast cancer. Mothers are advised to tell their DES-exposed sons and daughters about their exposure, even if these children have not had health problems. They need to know about DES so they can get the health care they need.

DES CHILDREN

DES SONS

Men exposed to DES before birth

DES sons are at increased risk for non-cancerous cysts on the back of the testicles (on the epididymis) and for underdeveloped testicles. DES sons should practice testicular self-examination regularly.

There has been little research on the effects of DES exposure in DES sons, but new studies are in progress. To protect your health, find out if you were exposed, and stay informed of new research findings.

DES DAUGHTER

Women exposed to DES before birth

All DES daughters need regular screening exams for a rare form of vaginal cancer (early detection saves lives). This exam is somewhat different form the one for non-expose women (see page 17). It should begin at puberty and continue throughout their lives.

All DES daughters need special care beginning in the first weeks of pregnancy, even if they have already had children. You can learn about the pregnancy care you need in this booklet. With proper care most DES daughter can have successful pregnancies.

Breast Cancer

It is likely that breast cancer develops as a result of complex interactions among hormonal, genetic, and environmental factors. The incidence of breast cancer has increased over the past several decades, and today 1 in 8 or 9 women in the United States will develop this cancer in her lifetime. There is general agreement that a woman's lifetime exposure to estrogens is an important influence on her likelihood of developing breast cancer. Early menarche and delayed menopause are associated with an increased risk.

Testicular Cancer

Testicular cancer is also increasing around the world, with some countries reporting a 4-5 fold increase over the past 30 years, though it still remains much less common than other malignancies.

Epidemiological links to early hormone exposure include the following observations:

Undescended testes (or cryptorchidism) is a major risk factor for developing testicular cancer. Fetal estrogen exposure is a known cause of undescended testes (DES provides an example).

First-born males have a higher incidence of testicular cancer, and first pregnancies have higher early estrogen levels than subsequent pregnancies.

Prostate cancer

There is general agreement that the incidence of prostate cancer is also increasing even after taking into account early diagnosis resulting from increasing use of newly-available blood tests. Approximately 40,000 men in the US die of this disease annually.

Male mice exposed to DES, estrogen, or bisphenol A develop enlargement and inflammation of the prostate. We have known for some time that the likelihood of prostate cancer increases with age and that many elderly men who die of other causes also have incidental prostate cancer which is unrelated to their deaths. But a recent human autopsy study shows that prostate cancer may develop much earlier than previously realized. This study found that, of 152 men who died of other unrelated causes, all less than 50 years old, 34% had evidence of cancer in their prostates when examined microscopically. Of those less than 40 yrs. old, 27% had prostate cancer. These remarkably high percentages, along with the animal data, suggest that prostate cancer may be yet another malignancy whose foundation is laid early in life, perhaps even in utero, but which does not be come apparent until later when hormone changes stimulate the dormant cancer to grow.

Sperm Counts

A series of studies in Europe, the UK, and the US indicate that there has probably been a substantial decline in human sperm counts over the past 40 years. Problems such as age, period of abstinence from sexual activity, and individual and geographical variability make this challenging to investigate, but the weight of evidence indicates a significant decline.

A recently published autopsy study of men who died of various causes unrelated to their reproductive tract compared results from 1991 with those obtained from a similar population of men in 1981, corrected for age and various other medical and social factors. In this study, the percentage of subjects with normal spermatogenesis on microscopic exam of their testes declined from 56% to 27% over the ten-year period. Complete spermatogenic arrest increased from 8% to 20% over the same period.

Altered neurological development, behavior, and learning

Studies in monkeys and rodents indicate that in utero exposure to dioxin, PCBs, and estrogenic chemicals can alter behavior and learning ability. Several human studies have similar findings.

Studies also showed that when expectant mothers consumed PCB-contaminated fish before and during pregnancy, this exposed their developing fetuses to this organochlorine during critical times of brain development.

One study of children followed for 11 years shows that those in the highest exposure group have an IQ deficit of about 6 points. Projected onto an entire population, this amounts to a large downward shift in the number of people with above average intellegence. Many more people with learning disabilities would also increase significantly. It is a biological phenomenon with enormous social consequences.

Laboratory studies suggest that the mechanism of this adverse effect may be through interference with thyroid hormone metabolism, though this is not known with certainty.

Other health effects

There are also data linking exposure to endocrine disruptors with other medical conditions. For example, a study of primates exposed to small amounts of dietary dioxin showed development of endometriosis. Some laboratory animal tests show a relationship between fetal estrogenic exposures and subsequent poor development of immunity.