- Clear Cell Adenocarcinoma (CCA) of the Vagina and Cervix – The risk is small, estimated at about 1 in 1,000 for this rare cancer. It was thought DES Daughters over age 30 were no longer at risk, but we now know this is a lifelong concern. Cases have been reported in Daughters older than age 50, when CCA also may occur in the unexposed population. Researchers are now watching for a possible spike in cases in post-menopausal DES Daughters. A population-based analysis by CDC researchers suggests an elevated CCA risk for DES Daughters as they age. There does not appear to be an upper age limit for this cancer in DES Daughters. If you or someone you know has been diagnosed with clear cell adenocarcinoma (CCA) of the vagina or cervix we urge you to contact the DES Cancer Registry. Researchers need your help in reporting these cases as they watch for that possible jump in the number of cancers as DES Daughters age past menopause.
- Proper DES Exam (Pap/Pelvic) - DES Daughters need a special ANNUAL EXAM [PDF] throughout their lives. Recent cervical cancer screening guidelines (March 2012) from the U.S. Preventive Services Task Force (USPSTF) allow many women to skip years between Pap exams but indicate clearly that the GUIDELINES DO NOT APPLY TO DES DAUGHTERS. See the second sentence in the Recommendations section where that is clearly spellout out. You might want to print this to show your doctor in case there is any question about your needing a yearly Pap/pelvic exam. Unfortunately, many doctors are not aware that DES Daughters have special needs so you may have to advocate for the health care you require.
A proper DES exam is similar to a routine exam for unexposed women, but the difference is important. Print the CDC's Annual Exam directions from the link (above), and show your doctor. After the exam, have the directions put in your patient file for subsequent visits. That way you’ll know you are getting the screening you need every year. Click here for information regarding Pap smears as one part of a DES Daughter Annual Exam.
- Abnormal Paps – For some DES Daughters, being told a Pap test came back abnormal is a common occurrence. But often, by about age 40, the body seems to heal itself and the routine of abnormal paps abates. However, no matter what the age, there should be follow-up with a doctor after every abnormal pap.
- Pap/Pelvic Exam After Hysterectomy and/or Menopause - DES Daughters need a yearly ANNUAL EXAM , even after a hysterectomy or menopause. Following a hysterectomy, even though the cervix was removed in the surgery, the vagina must still be checked every year for CCA (the DES-linked cancer). The exam directions (above) will work by focusing solely on the vagina after a hysterectomy. Print and bring these directions to your doctor to read when you go in for your screening. Following menopause, the yearly cervical and vaginal screenings should continue, just as before menopause. Since unexposed women generally don’t develop CCA, many doctors are not on alert for it. Without an annual exam you risk having a possible cancer go undetected. The reality is that the chance of getting CCA is slim, but it has been determined to be a lifelong risk for all DES Daughters, who should be checked for it annually, even after a hysterectomy or menopause.
- Breast Cancer – DES Daughters over age 40 are nearly two times as likely as unexposed women to get breast cancer. For DES Daughters older than age 50 the relative risk is estimated to be even higher. Background information about this from DES Action USA. Click here for the Journal article describing this DES breast cancer research.
- DES Action USA Statement on Breast Cancer Screening: In 2009, the United States Preventative Services Task Force (USPSTF) revised its mammography screening guidelines to start at age 50 and occur every other year, rather than every year, until age 75. There are many good reasons for this change in the guidelines, but be aware, these guidelines are for women of average risk. DES Daughters have been found to have an 80% higher chance of developing breast cancer after age 40 than unexposed women, according to the results of a major study conducted by researchers at the National Cancer Institute (NCI) published in the October 2011 issue of the New England Journal of Medicine. Therefore DES Action USA encourages all DES Daughters to remind their health care providers of their increased breast cancer risk and discuss an appropriate screening regimen.
Another good idea for DES Daughters is to have an annual clinical breast exam done by a health care provider, presumably at the same time as her Pap/pelvic exam. Also, DES Daughters may want to become aware of the normal appearance and feel of their breasts - and report any changes to their doctors.
There is no specific type of breast cancer linked to DES exposure. And once diagnosed, cancers in DES Daughters are treated the same way they are dealt with in unexposed women.
Finally, on 1/19/12 a Federal Judge ruled in a breast cancer case that there is scientifically valid evidence showing a link between DES and breast cancer. She ordered drug makers to negotiate settlements with the DES Daughters who had filed suit. But in April, 2012 those talks were deemed unsuccessful betwen the parties so an early January 2013 DES Breast Cancer trial began. But on the second day Eli Lilly offered a settlement that was acceptable to the plaintiffs so the trial abruptly ended. Futher negotiations for additional DES Daughters with breast cancer have not been successful so more DES breast cancer trials are expected.
- Structural Changes of the Reproductive Tract – DES Daughters have an increased incidence of structural changes in their reproductive organs, among them a T-shaped uterus (See illustration below). The uterine lining of a T-shaped uterus appears to be the same as for an unexposed woman so researchers suggest the fundamental difference (except for the shape) is in the underlying structure of the fibromuscle. Of note is that pregnant DES Daughters with a T-shaped uterus and those with a normally shaped uterus are both at increased risk for premature delivery.
Prenatal DES exposure can adversely affect the shape and functioning of virtually the entire reproductive tract, including the vagina, cervix, uterus, fallopian tubes, and ovaries. Some DES Daughters report having an incompetent cervix, which can be the cause for some second-trimester pregnancy losses.
- Infertility – DES Daughters have an increased risk for infertility with studies showing a 28% infertility rate after 12-months for DES Daughters compared with a 16% rate for unexposed women in the same time frame.
In general, infertility treatments for DES Daughters are the same as for other women, however they may want to see a doctor experienced in treating DES-exposed women. Go to Physician List to learn how to get names of doctors by state.
- Ectopic Pregnancy – DES Daughters require early confirmation of pregnancy to be certain the fetus is not developing outside of the uterus. Ectopic (or tubal) pregnancy is 3-5 times more frequent in DES Daughters compared with unexposed women.
- Miscarriage, Preterm Labor & Delivery – Because of the increased risks for these problems, all DES Daughters, even if they’ve had previous normal pregnancies, require high-risk obstetric care - starting at the earliest stage of pregnancy.
Most early miscarriages are not preventable, however: careful monitoring of the cervix as a “high-risk” patient is warranted.
To reduce the risk of late miscarriage or preterm pregnancy, a DES Daughter who is being treated as a “high-risk” obstetrics patient will learn to monitor for possible early contractions. If problems arise, various options, such as bed-rest and labor-stopping medications – used with care - can be considered.
Understanding the cause of a threatened second trimester pregnancy loss is important. Some second-trimester losses may occur in DES-exposed women because of incompetent cervices, while others are the result of premature labor. This is an important distinction, since the treatments employed in these conditions are different. A cerclage (stitch) may be done to keep the cervix closed if an incompetent cervix is the problem. In the case of premature labor the doctor may recommend drugs to suppress labor, and a cerclage would be of no use.
- Preeclampsia - DES Daughters have a slightly higher risk for this pregnancy complication involving a form of high blood pressure and edema (fluid retention). It is important for DES Daughters to receive high-risk obstetric care even if they've had a previous successful birth.
- Endometriosis – DES Daughters are at increased risk for this painful chronic disease. They often have anatomical complications such as cervical stenosis (narrowing of the cervical canal, sometimes to the point of closure) that may increase the likelihood of retrograde menstruation. Other anatomical malformations common to DES Daughters may also increase the risk.
- Uterine Fibroids –These benign tumors can cause pain, bleeding, infertility and pregnancy complications and are the leading cause for hysterectomies nationwide. In a recent study the findings show that fibroids in DES Daughters tended to be larger than in unexposed women, meaning the tumors may have either started earlier, or grown faster, or both. More research is needed. The good news for many women is that uterine fibroids regress after menopause.
- Paraovarian Cysts – Prenatal DES exposure is associated with an increased risk for these benign gynecologic tumors (or non-cancerous fluid-filled sacs adjacent to, but not part of the ovary). The cysts include:
- functional (follicular and corpus luteum), cystadenoma (serious and mucinous) or simple cysts;
- endometrioma (chocolate cyst);
- benign cystic tertoma (dermoid cyst);
- parovarian including hydatid and paratubal.
These cysts are common among all women in the U.S. and treatment is generally surgery, depending on the symptoms of discomfort being experienced, whether DES-exposed or not. Many women with cysts have no symptoms and need no treatment.
- Menopause – Research indicates that DES Daughters may begin menopause slightly earlier than unexposed women. However, it appears the experience for DES Daughters is no different.
Studies have not been done specifically concerning DES exposure and HRT use. But since DES Daughters were awash in a synthetic hormone before birth, and knowing of current studies on HRT dangers, it is prudent to use the lowest dose for the shortest length of time possible - if HRT is absolutely needed. We suggest discussing this issue carefully with your physician to determine your safest and best course of action. This 2012 review of HRT risks vs benefits details the concerns. Here are some hot flash tips from DES Daughters that don't involve HRT.
- Depression - It appears that DES exposure before birth may be linked with an increased risk for adult depression and anxiety. Results from the Nurses' Health Study II (with more than 76,000 participants) indicate a history of depression reported by 19.7% of DES Daughters compared with 15.9% of unexposed women. The study was reviewed in the DES Action VOICE newsletter. However, other studies have come to different conclusions. In 2003, researchers with the National Cancer Institute's DES Follow-up Study found no correlation between depression and DES exposure. The reported incidence was nearly the same in both the exposed and the control unexposed group. That study was also reviewed in the VOICE.
- Gender and Psychological Issues
Questions have been raised regarding the possibility that DES might be linked to increased rates of homosexuality and transgender issues. Even though animal studies point in that direction, so far no evidenced-based research in human populations has shown it to be true. Researchers have also been unable to connect DES exposure with psychological disorders, except for depression. Click here for a review of the research published in the DES Action VOICE newsletter in 2003. Read DES Action USA Co-founder Pat Cody's comments on why it is difficult for researchers to study these questions and develop definitive answers.
National Cancer Institute DES Fact Sheet provides an up to date rundown of health impacts for DES Daughters and others in the DES community from a highly respected resource.
Cervical Cancer Vaccine
The cervical cancer vaccine that is now available does NOT protect against the type of cancer linked to DES exposure, clear cell adenocarcinoma (CCA) of the cervix and vagina. It provides protection against the more common type of cervical cancer that is caused by the Human Papilloma Virus (HPV). Click here for more information regarding the vaccine and DES.
DES creates emotional trauma for all who come in contact with it: DES Mothers (and Fathers), DES Daughters, DES Sons, and DES Grandchildren.
Upon first learning of exposure, many DES Daughters react with shock, disbelief, and even a sense of betrayal. It can strain the mother-daughter relationship even though both parties involved are victims. Some DES Daughters want to brush off the known risks as “not a concern” to them, only to grow more interested when/if DES health problems develop. Meanwhile, other DES Daughters investigate all possible consequences as soon as they learn of their exposure. Some DES Daughters must deal with fear and anxiety when new health problems are identified. Others have anger issues, sometimes (sadly), against their mothers but more commonly against doctors, drug companies and the world in general. Experience shows that keeping lines of communication open can be helpful. Staying current on the latest DES findings and health screening recommendations can open discussions with family members. Taking action can reduce feelings of helplessness. That includes being vigilant in getting proper medical care. Climbing on our soapbox now – joining DES Action can be another step toward healing. Members get new information throughout the year and feel good about doing something positive by supporting an organization actively pushing for more DES research.
It is important to see a doctor who knows how to care for DES-exposed individuals. You have a right to question your doctor and seek a second opinion. DES Action has a Physician List available free of charge.
There may be no obvious signs of DES exposure. Women who were given medication to prevent miscarriage primarily from 1938-1971 (but certainly not limited to those years), in the United States – might have been prescribed DES. It was frequently used if a woman had a previous miscarriage, diabetes, or a problem pregnancy with bleeding, threatened miscarriage or premature labor.
Up until the mid to late 1950s some women were given DES shots. After that time, DES was given primarily in pill form, because both doctors and their patients found it much easier to handle the drug that way.Complicating identification of DES exposure is the fact that some prenatal vitamins contained DES and were prescribed even if there were no problems in the pregnancy. Finally, even though in 1971 the FDA told doctors to stop prescribing DES to their pregnant patients, some doctors continued to do so. Click here for an article from the DES Action VOICE newsletter about that.
As years go by, it becomes increasingly difficult to prove DES exposure. However, if you want to try, here are tips for doing a Medical Records Search.
DES Daughter’s On-Line Support Group
This benefit of DES Action membership allows you to be in touch, via e-mail, with other DES Daughters. You can ask questions and share experiences common only to those who are DES-exposed. We’ve had lively discussions about cancer, legal issues, DES Grandchildren, and menopause, to name a few. If you are a DES Action member, we hope you will give it a try. If you are not a member, please look into the many benefits of joining now.