DES daughters

Diethylstilboestrol (DES) was a medication commonly prescribed between 1946 and 1971 to prevent miscarriage. DES was a synthetic form of estrogen, one of the female sex hormones that regulates the menstrual cycle. We now know that exposure to DES in the womb can cause a range of reproductive changes and problems later in life.

A person whose mother took DES during pregnancy is known as a DES daughter or a DES son. Anyone who was exposed to DES needs special healthcare, even if they are not having any obvious health problems.

How DES was prescribed#

DES was sold under many different brand names. It was commonly prescribed, usually as a pill, to women who had fertility problems, who were at risk of miscarriage, or who had a history of pregnancy problems such as bleeding, miscarriages, premature births, stillbirths or diabetes. Sometimes it was given together with vitamin supplements, and some women did not realize they were being prescribed a hormone medication.

How to find out if you were exposed to DES#

If you think you took DES while pregnant, or that your mother took it while she was pregnant with you, it is important to check your medical records. You may be able to request records from the doctors, obstetricians, hospitals and pharmacists involved in your care. If you cannot find out for sure but suspect you may have been exposed, you should have a DES examination to remove any doubt.

DES mothers#

If you were given DES while you were pregnant, you are a DES mother. Exposure to DES increases your risk of developing certain diseases, such as breast cancer (especially if you are aged over 70).

Special healthcare for DES mothers includes:

• a monthly breast self-examination
• a breast x-ray (mammogram) where appropriate
• an annual gynecological 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 has increased your risk of developing certain reproductive and urinary-tract problems, and you should examine your testicles for lumps every month. Common DES-related problems in DES sons include:

• lowered sperm count
• undescended testicles
• underdeveloped testicles
• cysts on the testicles

DES daughters – gynecological changes#

DES daughters can experience many changes to their reproductive organs – some harmless, others serious. Even if a DES daughter does not have any obvious health problems, she still needs special healthcare, including 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 caring for women who have been exposed to DES. This is because some DES-related changes can be misdiagnosed as other gynecological conditions.

Vaginal adenosis#

DES exposure commonly causes adenosis, where 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#

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#

DES exposure can alter the shape of the cervix (the neck of the uterus). To a doctor unfamiliar with DES-related changes, these can look a lot like cervical polyps, which are common and harmless growths. This misdiagnosis can lead to unnecessary surgery.

Changes to the cells of the cervix#

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 such 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.

Clear-cell cancer, or adenocarcinoma, is a rare cancer of the vagina or cervix associated with DES daughters. If it is discovered at an early stage, doctors can treat it successfully. It is important to have regular DES examinations, because a cervical screening test may not pick up clear-cell cancer.

Research on breast cancer risk is limited, but a 2006 study indicated that DES daughters may have a slightly increased 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 breast check by their doctor, breast screening (mammography) every two years, and a monthly breast self-examination.

Having a DES examination#

You should have a special DES check-up every year. The recommended yearly examination includes:

• a careful inspection of the vagina
• a cervical screening test, with samples taken from the upper vagina as well as the cervix
• an internal pelvic examination
• a breast examination by your doctor

A DES examination might also include:

• a colposcopy – an examination of the cervix using a speculum (as for a cervical screening test) and a kind of microscope called a colposcope
• a biopsy (occasionally required) – a small sample of tissue taken from your vagina or cervix to be examined under a microscope

DES daughters and reproduction#

DES daughters may experience a range of problems relating to fertility, pregnancy and contraception. If you are a DES daughter, you will need to take your exposure into account when you choose a method of contraception. Discuss your options with a doctor who understands that you are a DES daughter.

Contraceptive limitations for DES daughters#

Some of the contraceptive issues DES daughters may experience include:

• natural family planning – heavy vaginal discharge might make it more difficult to interpret your cervical mucus for fertile and infertile days
• intrauterine devices (IUDs) – if you have changes in the shape of your uterus, you will need to avoid using an IUD

DES daughters can choose other contraceptive methods, such as:

• hormone treatments such as Depo-Provera injections
• the pill – the combined pill contains estrogen, but there are no reported problems specific to DES
• the ‘mini-pill’ (progestogen only) – there are no problems with DES
• condoms
• the diaphragm
• the high-hormone-dose ‘morning after pill’ – this may be used if appropriate

Whatever method you choose, it is vital that you consult a doctor who understands your DES exposure.

Abortion, miscarriage and DES daughters#

It is possible, but not proven, that having an abortion could increase your risk of cervical incompetence (where the cervix cannot remain properly closed during pregnancy) and miscarriage in future pregnancies. However, it is important to remember that women who were not exposed to DES sometimes have fertility problems too.

DES daughters and infertility#

DES daughters have a slightly increased risk of infertility. If you are having trouble conceiving, it might be caused by reasons other than your exposure to DES. Treatment for infertility depends on the cause. In vitro fertilization (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 fertilized egg lodges in a fallopian tube instead of in the uterine wall
• miscarriage – an incompetent (weak) cervix can cause a miscarriage in both the first and second trimesters
• premature labor – caused by an incompetent cervix
• delivery problems

As DES exposure ceased in 1971, issues around pregnancy in DES daughters are becoming rare.

Children of DES sons and daughters#

Most children of DES daughters and sons (the DES third generation) are only beginning to reach the age when any relevant health problems, such as reproductive tract problems, can be studied. There is no clear reason to believe that children born to DES daughters or sons will be affected, and animal studies do not conclusively show any DES-related problems by the third generation.

Key points#

• DES exposure in the womb can cause a range of reproductive changes and problems later in life.
• DES was commonly prescribed, usually as a pill, to women who had fertility problems or who were at risk of miscarriage.
• Some women did not realize they were being prescribed a hormone medication.
• Common DES-related problems in DES sons include a lowered sperm count.
• It is important to tell any healthcare professional that you have been exposed to DES.

Where to get help#