What are the chances I was exposed to DES?
If you were pregnant between 1938-1971 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’ve 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.
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. But 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 is suggested.
Researchers are further investigating findings that show DES Daughters join DES Sons with an increased risk for cardiovascular disease (stroke, coronary artery disease and heart attach); diabetes; osteoporosis; and fractures.
Describe The DES Daughter Pap/pelvic Exam.
The screening is similar to a routine Pap/pelvic exam but it is 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 gyn 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.
My Pap Results Are Abnormal And I'm A DES Daughter.
Abnormal can mean many things, so it’s important to find out from the doctor specifically why the test results are of interest. Then determine the follow up in consultation with the doctor. If possible it’s best for DES Daughters to 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?
Many women worry about using HRT and that is especially true for DES Daughters who were exposed to high levels of a synthetic estrogen before birth. Many try to avoid extra hormonal exposures, which is the preferred suggestion. However, sometimes symptoms can be brutal and interfere with a woman’s quality of life. Try non-hormone options first but IF needed, and only then, work with your doctor on an HRT choice at the lowest dose for the shortest period of time. 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) – that can result in an increased risk for testicular cancer; epididymal cysts – that are benign fluid filled sacs that can be painful and may be deemed appropriate for surgical removal; testicular inflammation/infection – that researchers suspect may be due to minor obstructions in the testicles; and microphallus (micropenis) – that has no impact on fertility, although it 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.
Researchers are further investigating findings that show DES Sons join DES Daughters with an increased risk for cardiovascular disease (stroke, coronary artery disease and heart attach); diabetes; osteoporosis; and fractures.
Are Gender Issues Related To DES Exposure?
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 then whether DES exposure might itself be the cause, or perhaps combined with other exposures be a trigger for variations.
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.
Are The DES Exposed 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 much we don’t know and 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 Even If Not Prescribed For Them?
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.
But some families report DES-like health issues for individuals born from subsequent pregnancies. One possibility is that in the 1950s and early 60s 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 affect on a woman’s eggs, meaning the eggs that are left and used in subsequent pregnancies, may have been adversely impacted by exposure. But again, this is a suggestion and has not been proven true by researchers.
What Are The Affects For DES Grandchildren?
Possible generational affects 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 seem to have delayed menstrual regularity (meaning it takes longer to achieve predictable cycles) at higher rates than unexposed women. The study also suggests the possibility that infertility may be more frequent in DES Granddaughters, and that’s being studied now.
Among DES Sons, European studies found that they are born with hypospadius more frequently than unexposed men. However in U.S. research that result has not been replicated. Hypospadius 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 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?
Unfortunately, it is becoming increasingly difficult to hold 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.