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Diethylstilbestrol (DES) is a type of hormone medication that was first used in the 1940s. Up until the 1970s or a little later, it could be used with pregnant women and the consequences of this were eventually discovered to be extremely dangerous to pregnant women and their offspring. DES did cause problems in fetuses, which often weren’t expressed until people reached young adulthood. Men born of a mom who took diethylstilbestrol had an increased risk of developing cysts on the testicles and women born of moms who were given DES were at significantly increased risk for developing cancer of the vagina, reproductive system cancer, and breast cancer. The popularity of DES plummeted as these facts became more prominent, and in places like the US, the drug is no longer manufactured for human use.
When diethylstilbestrol was in most use it was principally prescribed for conditions like gonorrhea and vaginitis. It might be used at any time in a woman’s life. One of the reasons DES is linked to pregnant women is because the drug appeared successful in reducing miscarriage rate.
Those women at risk for miscarriage might be prescribed diethylstilbestrol, thus creating a very vicious cycle for children who were born exposed to it. This was not a small number of people, and it’s estimated that about 7.5 million pregnant women in the US, or even more, took this medication. As later tested, the drug really did nothing to prevent miscarriage, though it appeared to have use as an emergency contraceptive.
Despite the potentially devastating effects of diethylstilbestrol, the drug has been found to be useful in some rare circumstances. In later stages of breast cancer it appears to be beneficial, but no more so than drugs like tamoxifen. It also might be of use in treating some cancers of the prostate. Still, given the severity of issues that arose from prescribing DES, there simply wasn’t interest in continuing to manufacture the drug.
The reason diethylstilbestrol continues to be of interest is largely due to the fact there are so many children who were born exposed to it. In the 2000s many of these children may have had children too. While sons and daughters born to mothers who took DES are called second generation, the third generation of DES babies is also present, and there are concerns about what health problems these children, who may already be in adulthood, may face.
To address these concerns for second and third generation children, there are health guidelines, particularly for women. It is very important that women who were exposed to diethylstilbestrol in utero be followed by knowledgeable physicians and receive regular extensive pelvic exams and mammograms. Thorough discussion of reproductive health and risks versus benefits of having children whether second or third generation could be of value too.
Thank you for sharing information about diethylstilbestrol (DES). You cannot tell by looking at a person whether she or he was exposed to the drug - but millions were, and are dealing with the effects.
As far as I know, DES was prescribed primarily to prevent miscarriage and during problem pregnancies. I had not heard that it was used all that often for gonorrhea or vaginitis. However, because it was FDA approved, doctors could give it to patients for any off label use they wished.
While reproductive cancers are a concern for those exposed to DES before birth, perhaps the most common health impacts that have emerged through the years are reproductive tract problems such as infertility.
While, luckily, only a
small number of so-called DES Daughters have been diagnosed with vaginal or cervical cancer linked to exposure, many do have difficulties starting their own families. Such a tragedy, given that DES was primarily prescribed to help women have healthy babies. Many of these woman, the DES mothers, had to watch helplessly as their daughters and sons struggled to become parents themselves.
Fran Howell, Executive Director, DES Action USA.
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