About DES daughters
Diethylstilbestrol (DES) was a commonly prescribed medication to prevent miscarriages in Australia between 1946 and 1971. If your mother took DES during pregnancy, you are a DES child. We now know that exposure to DES in utero can cause various reproductive changes and fertility problems later in life.
Estrogen is one of the female sex hormones that regulates the menstrual cycle. DES is a synthetic estrogen sold under various brand names.
Doctors and obstetricians used to prescribe DES to women with fertility problems or at risk of miscarriage, usually in pill form. Doctors occasionally administered the drug along with vitamin supplements, and some women may not realise they were taking any medication.
Anyone exposed to DES requires special medical attention, even without obvious health problems.
How to find out if you were exposed to DES
DES was commonly prescribed to women who had a history of pregnancy problems such as bleeding, miscarriages, premature births, stillbirths or diabetes. Some women didn’t know they were being prescribed a hormone pill.
If you think you either took DES while pregnant or your mother took it while she was pregnant with you, it is essential to check your medical records. Under the Freedom of Information Act 1982, you can see your records from doctors, hospitals and pharmacists.
If you can’t find out for sure, but suspect you may have been exposed to DES, you should have a DES examination to remove any doubt.
DES mothers
If you were given DES while pregnant, you are a DES mother. Exposure to DES has increased your risk of developing certain diseases, such as breast cancer (especially if you are aged over 70).
Exceptional healthcare for DES mothers includes:
- monthly breast self-examination (BSE)
- breast x-ray (mammogram) through BreastScreen Victoria if asymptomatic
- annual gynaecological check-up including a cervical screening test.
DES sons
If you are a man whose mother took DES while she was pregnant with you, you are a DES son. Exposure to DES has increased your risk of developing specific reproductive and urinary-tract problems, and you should examine your testicles for lumps every month.
Some common DES-induced problems in DES sons include:
- undescended testicles
- underdeveloped testicles
- cysts on the testicles
- lowered sperm count.
DES daughters – gynaecological changes
DES daughters can experience many changes to their reproductive organs – some harmless, others serious. Even if a DES daughter doesn’t have any obvious health problems, she still needs exceptional healthcare. This includes regular physical examinations for life.
It is important to tell any healthcare professional that you have been exposed to DES. If any surgery is recommended on your vagina, cervix, fallopian tubes or uterus, always get a second opinion from a doctor experienced in looking after women who have been exposed to DES. This is because some DES-related changes can be misdiagnosed as other gynaecological conditions.
Vaginal adenosis in DES daughters
DES exposure commonly causes adenosis, where a part of the vagina and cervix secretes mucus (becomes ‘glandular’). An increase in vaginal discharge is usually the only symptom, and the tissue is otherwise healthy. There is no need for medication or any other treatment. In fact, unnecessary surgery to remove the adenosis might make it difficult for doctors to interpret the findings of future DES examinations.
Altered shape of the uterus in DES daughters
DES exposure can change the shape of the uterus, usually with no ill effect. Sometimes, a woman’s fertility can be affected, and an operation is needed to correct the shape of her uterus.
Altered shape of the cervix in DES daughters
DES exposure can alter the shape of the cervix (the neck of the uterus). To a doctor unfamiliar with DES-related gynaecological changes, these changes can look like cervical polyps, which are common and harmless growths. This misdiagnosis can lead to unnecessary surgery.
Changes to the cells of the cervix in DES daughters
Dysplasia, or cervical intraepithelial neoplasia (CIN), is a change in the cells of the cervix or vagina. DES-exposed women have a higher risk of developing cell changes. Sometimes, vaginal adenosis can be misdiagnosed as CIN.
Cancer and DES daughters
DES daughters have a higher risk of developing certain cervical and vaginal cancers and pre-cancerous conditions. You should have a special DES check-up every year, an annual breast examination by your GP and mammography every two years, once you have reached 40 years of age.
Clear-cell cancer and DES daughters
Clear-cell cancer, or adenocarcinoma, is a rare cancer of the vagina or cervix associated with DES daughters. If this cancer is discovered early, doctors can treat it successfully. It is essential to have regular DES examinations, because a cervical screening test may not pick up the clear-cell cancer.
Breast cancer and DES daughters
Research is limited on the risks of developing breast cancer for DES daughters. Still, a 2006 study indicated that DES daughters may have a slightly enlarged risk of developing breast cancer after the age of 40 (1.4 times the risk of the general population).
All DES daughters over the age of 40 should have an annual medical breast check by their GP, as well as breast screening every two years through BreastScreen Victoria, and a monthly breast self-examination.
DES Screening
Recommended annual screening for DES includes:
A complete vaginal exam, a cervical screening test, performed on both the upper vagina and the cervix, a pelvic exam, and a breast exam performed by a primary care physician.
Other Procedures for Daughters with DES
DES screening may also include:
- a colposcopy: examination of the cervix with a speculum (as in cervical screening) and a microscope called a colposcope;
- a biopsy (sometimes necessary): a small sample of tissue is removed from the vagina or cervix for examination under a microscope.
- Daughters with DES and Reproduction
- Daughters with DES may experience various problems related to fertility, pregnancy, and contraception.
Limitations of Contraception for Daughters with DES
If you are a daughter with DES, you should consider the effects of DES when choosing a contraceptive method. Discuss your options with a doctor who appreciates that you have degenerative encephalomyelitis syndrome (DES).
Some contraceptive problems that daughters with DES may face include:
Natural family planning: Heavy vaginal discharge can make it challenging to interpret cervical mucus to determine fertile and infertile days.
Intrauterine devices (IUDs): If you experience changes in the shape of your uterus, you should avoid using an IUD.
Daughters with DES can choose other contraceptive methods, such as:
- Anticancer pills: Combination pills contain estrogen, but no DES-specific problems have been identified;
- Other hormonal medications, such as Depo-Provera injections and the high-dose morning-after pill, can be used as needed;
- Mini-pills (containing only progestin): do not pose problems with EDS;
- Condoms;
- Diaphragms and spermicide.
Abortion, miscarriage and DES daughters
If you are considering having an abortion, you must consult with a doctor who understands your DES exposure. It is possible, but not proven, that having an abortion could increase your risk of cervical incompetence (where the cervix can’t remain closed adequately during pregnancy) and miscarriage in future pregnancies.
DES daughters and infertility
DES daughters have a slightly increased risk of infertility. However, it’s important to remember that women who weren’t exposed to DES sometimes have fertility problems too.
If you are having trouble conceiving, it might be caused by reasons other than your exposure to DES. Infertility treatment depends on the cause. In vitro fertilisation (IVF) and other infertility treatments are available to DES daughters and work as well for them as for other women.
Risks in pregnancy for DES daughters
DES daughters have a slightly higher risk of certain pregnancy complications, including:
- ectopic pregnancy – a serious condition where the fertilised egg lodges in a fallopian tube or in the uterine wall
- miscarriage – an incompetent (weak) cervix can cause a miscarriage in both the first and second trimesters (the first or second three months of pregnancy)
- premature labour – caused by an incompetent cervix
- delivery problems.
- As DES exposure ceased in 1971, issues around pregnancy are becoming rare.
Children of DES sons and daughters
Most children of DES daughters and sons (the DES third generation) are just beginning to reach the age when any relevant health problems (such as reproductive tract problems) can be studied.
There is no reason to believe that children born to DES daughters or sons will be affected. Animal studies don’t conclusively show any DES-related problems by the third generation.
Overview
DES Daughters with degenerative disease syndrome (DDS) faced a variety of serious health problems, including an increased risk of developing clear cell adenocarcinoma of the vagina and cervix, fertility issues, pregnancy complications, and structural abnormalities of the reproductive organs. In addition to the physical impact on their health, many daughters with DDS also suffered psychological and emotional trauma as a result of the diagnosis and the uncertainty surrounding their long-term health.
The DDS tragedy offers several important lessons for modern medicine and public health policy. First, it highlights the importance of long-term research and post-marketing surveillance of medications, especially when used during pregnancy. Second, it underscores the need for transparency and full informed consent in all aspects of patient care. Finally, it highlights the importance of recognizing and supporting those affected through specialized medical care, advocacy, and access to compensation or support systems.
Today, the SDZ legacy continues to shape regulatory policy and ethical standards in the fields of drug development and reproductive health. It is a cautionary tale that underscores the need for scientific rigor, ethical responsibility, and an unwavering commitment to patient safety, especially when the lives of the most vulnerable are at stake.