What are the chances I was exposed to DES?
If you were pregnant between 1938 and 1971 and were prescribed any medications for bleeding, miscarriage, premature birth, or diabetes, you may have been prescribed DES. If you were born during that time frame, ask your mother (or other relatives who might know her pregnancy history) about any medications she may have been given while pregnant with you. Also, assess your health history to see if the medical problems you have experienced are those listed on this website. That may be a clue because it has become increasingly less likely that you can obtain medical record confirmation of exposure. If your grandmother was pregnant or your mother or father was born during those years, you may be a DES Granddaughter or DES Grandson. Please see our DES Grandchildren page for possible impacts on your health.
What is my risk for cancer as a DES daughter?
DES Daughters (women whose mothers were prescribed DES while pregnant with them) have a lifelong risk for a rare cancer of the vagina or cervix called clear cell adenocarcinoma (CCA). It is practically nonexistent in unexposed women before menopause and occurs in 1 in 1,000 DES Daughters. However, researchers are watching for a possible spike in cases as DES Daughters age into the years when CCA is more frequently diagnosed. DES Daughters should have the special annual Pap/pelvic exam as detailed in the section on DES Daughters.
DES Daughters over age 40 also run an increased risk for breast cancer. Yearly breast screenings, clinical breast exams, and reporting any change in your breasts to your doctor are suggested.
Researchers are further investigating findings that show DES Daughters join DES Sons with an increased risk for cardiovascular disease (coronary artery disease and heart attack), diabetes, osteoporosis, and fractures.
What is the DES Daughter Pap/pelvic exam?
The screening is similar to a routine Pap/pelvic exam but more comprehensive. The doctor will take cell samples from the cervix (which is done in all women) and also from the anterior (top) vaginal wall. You will know this is being done as the speculum will be rotated for access. The doctor should also palpate the vagina walls, feeling for anything abnormal under the surface since that’s where the cancer specifically linked to DES exposure (CCA) develops; this is not part of a routine gynecological exam but is important for DES Daughters.
No upper age limit has been identified for CCA, so it is suggested that DES Daughters have annual screenings even if some women can skip years between exams.
Do I still need Pap/pelvic exams after a hysterectomy?
Yes, DES Daughters should have annual Pap/pelvic exams even after a hysterectomy. Even though the cervix was removed in surgery, you remain at risk for clear cell adenocarcinoma (CCA) of the vagina and should be screened for it.
What does an abnormal Pap result mean for DES Daughters?
Abnormal Pap results can mean many things, so it is essential to find out from the doctor specifically why the test results are of interest. Then, determine the follow-up in consultation with the doctor. DES Daughters should opt for the least invasive option, such as repeating the Pap in several months. However, sometimes watching and waiting isn’t a possibility. If faced with the choice of a cone biopsy, cryosurgery, or LEEP, DES Daughters may want to select the LEEP procedure because it’s the least invasive. DES Daughters heal differently and often develop more scar tissue than other women. They also are at increased risk for cervical stenosis, which is a hardening of the cervix.
What about menopause and hormone replacement therapy (HRT)?
Many women worry about using HRT, which is especially true for DES Daughters who were exposed to high levels of synthetic estrogen before birth. Many try to avoid extra hormonal exposures, which is the preferred suggestion. Symptoms can be brutal and may interfere with a woman’s quality of life. It is suggested that non-hormone options are tried first; however, if HRT is necessary, work closely with your doctor to use the lowest possible HRT for only a short period. Most women can successfully taper off HRT, but again, it’s thought best for DES Daughters to avoid it in the first place.
What are the health issues for DES Sons?
DES Sons (men whose mothers were prescribed DES while pregnant with them) are at increased risk for structural changes that include cryptorchidism (undescended testicles), which can result in an increased risk for testicular cancer; epididymal cysts, which are benign fluid-filled sacs that can be painful and may be deemed appropriate for surgical removal; testicular inflammation/infection, which researchers suspect may be due to minor obstructions in the testicles; and microphallus (micropenis), which has no impact on fertility but can have psycho-social significance.
DES Sons are slightly more likely than unexposed men to experience infertility, but most DES Sons appear able to father children. Hypospadias is a condition where the urethral opening on the penis is in the wrong place, emerging somewhere down the shaft instead of at the tip. In many cases, hypospadias can be corrected with surgery.
A study in Science in 1975 identified several conditions that occur more often in males exposed to DES, including hypospadias. Additional studies after that one similarly found a higher incidence of hypospadias in both DES Sons and DES Grandsons than in the general population.
Researchers are further investigating findings that show DES Sons join DES Daughters with an increased risk for cardiovascular disease (coronary artery disease and heart attack), diabetes, osteoporosis, and fractures.
Is DES exposure related to gender issues?
Endocrine disruptors are being examined in gender identity studies, but DES research has not found a conclusive DES link. One confounding thought now under investigation regards the layering of endocrine disruptive exposures, both prenatally and perinatally. Researchers want to understand if there is an association and whether DES exposure might be the cause or trigger variations combined with other exposures.
How is DES linked to depression/anxiety in DES Daughters and DES Sons?
Yes, some European studies have linked prenatal DES exposure to an increased risk for depression and anxiety. No different treatment protocols have been suggested for the DES-exposed. A study presented in the journal Epidemiology in September 2019, from the NCI’s DES Combined Cohort Follow-Up study, quoted researchers, “We found a potentially slightly increased risk of depression in women who were exposed very early in gestation. Also noted was a weak link in women and men exposed to a low cumulative prenatal dose of DES, but among men, this was apparent only after accounting for other factors.” See the DES Daughters and DES Sons tabs for more information.
Are DES exposed individuals at higher risk for autoimmune disorders?
Despite animal studies from the 1990s indicating a link between autoimmune diseases and DES exposure, no human studies have found that connection, with the exception of Rheumatoid Arthritis, which occurs at higher rates in the DES-exposed. However, there is still much we need to learn as studies continue. One area of interest is whether those exposed to DES may develop autoimmune diseases earlier in life than unexposed individuals.
Can DES affect subsequent pregnancies?
Researchers believe that DES does not stay in a woman’s body, so only a child of the pregnancy in which it was prescribed is considered to have been exposed.
However, some families report DES-like health issues for individuals born from subsequent pregnancies. One possibility is that in the 1950s and early 1960s, DES was included in formulations of many prenatal vitamins. So, exposures may have occurred without an actual DES prescription.
Another hypothesis needing further study is that DES might have a harmful effect on a woman’s eggs, meaning the eggs that are left and used in subsequent pregnancies may have been adversely impacted by exposure. This remains a suggestion and has yet to be proven true by researchers.
What are the effects of DES on DES Grandchildren?
Possible generational effects from DES extending into the DES Grandchild generation (offspring born to DES Daughters or DES Sons) and into further generations are under study.
Among DES Granddaughters, an important study found that they may have delayed menstrual regularity (meaning it takes longer to achieve predictable cycles) at higher rates than unexposed women. A study that appeared in Reproductive Toxicology in December 2018 states that DES Granddaughters have a higher risk of irregular menstruation, of going at least six weeks without a period, and of having a preterm birth delivery than other women in the population whose mothers were not DES Daughters. The study also suggests the possibility that infertility may be more frequent in DES Granddaughters, and that’s being studied now.
Among DES Grandsons, European studies found that they are born with hypospadias more frequently than unexposed men; however, research performed in the United States has been unable to reproduce this finding. Hypospadias is a condition where the urethral opening on the penis is in the wrong place, emerging further down the penis shaft instead of at the tip. Studies done in both the Netherlands and France indicate that male children of DES Daughters may be at greater risk for this birth defect than unexposed individuals. Boys born to DES Sons appear to have an increased risk of micropenis and undescended testicles, found in a recent small study out of France. Please see the DES Grandchildren page for more information.
Animal studies indicate a higher rate of reproductive tract tumor growth in DES Grandchild mice, but researchers caution that more studies are needed to determine conclusively if what happens in laboratory animals also occurs in humans.
A French study published in the September 2016 issue of the journal Pharmacoepidemiology found an increased risk for cerebral palsy as well as six types of birth defects which occurred more frequently among DES Grandchildren, in order of decreasing risk: esophagus defects, other digestive defects, male genital tract anomalies (especially undescended testicles(s) and hypospadias), cleft lip/palate, musculoskeletal anomalies, and congenital heart defects. More studies are needed to confirm these risks.
Studies have not found an increased cancer risk for DES Grandchildren, except for the possibility of a higher risk for ovarian cancer among DES Granddaughters. Researchers are studying this possibility further.
Can I obtain compensation through the courts for DES harms?
There are many factors that affect your ability to hold the drug makers accountable for medical problems caused by DES exposure. Statute of limitations rules, obtaining medical record proof that DES was prescribed, and often which drug maker produced the DES have all become serious sticking points in litigation.
But there are still settlements being made by Eli Lilly. Please read our interview with Janic Robin in Fall 2022 DES newsletter “DES Cases Still Being Filed,” view our video interview with Michael London and use our Lawyers’ List to explore your options. All of the above are available free on DES Action website.
How many pregnant women were given DES?
No one knows exactly and official estimates range between five and 10 million women. Here is some interesting data from the NIEHS website from a report on carcinogens. For more information view the official PDF here.
