What Is DES Syndrome?

Diethylstilbestrol (DES) syndrome is a group of reproductive health problems noted in women born to mothers who were prescribed DES in pregnancy. This synthetic estrogen was used from the late 1930s into the 1980s in an attempt to prevent miscarriages and stillbirths. Researchers later realized that DES daughters, as they are known, were more prone to certain reproductive health conditions because of their exposure to the drug during pregnancy. Use of DES in pregnant women is no longer standard due to these health risks.

Women exposed to DES in pregnancy are more at risk of vaginal and cervical cancers. They can also experience infertility and other problems related to the reproductive tract as part of DES syndrome. Their incidence of breast cancer is higher than that of the general population. These abnormalities did not become readily apparent until children born to mothers who took DES grew up, at which point an entire generation had already been exposed to the medication.

In addition, women who used DES during pregnancy have a higher risk of breast cancer. They do not experience the gynecological cancers associated with fetal exposure, but do need to receive routine evaluations for breast abnormalities to catch breast cancers early. These complications also only became apparent later, as it can take decades for breast cancer to develop. As with some other cancer causing substances, DES wasn't immediately linked to these problems, because epidemiologists had to put together several pieces of the puzzle to find the connection.

This public health issue illustrates the complexity of conducting drug safety studies on pregnant women. DES syndrome didn't become apparent until the medication had been in use for several decades, and there was no way to predict DES syndrome on the basis of the original research that led to drug approval. Tracking drug complications after medications are released on the open market is an important component of drug safety that allows care providers to identify emerging long-term complications as early as possible.

Women born between approximately 1940 and 1980 may be at risk for DES syndrome, depending on where they were born. Some nations phased out use of this medication earlier than others. In cases where there are concerns about DES syndrome, the patient may need more extensive diagnostic scanning and evaluation than is recommended for the general population. This can include starting breast cancer screening earlier in life and receiving Pap smears more regularly to identify early signs of cellular changes.