DES follow-up

The DES Clinic at the Women’s is Victoria’s only specialist clinic for the monitoring and care of women who were exposed in utero to the drug DES (diethylstilboestrol).

Over the years a great deal has been revealed about DES exposure but there is still the possibility that long-term effects will emerge in years to come. This means women exposed to DES require ongoing monitoring for the rest of their lives.

Health issues treated

The DES Clinic sees women who have been exposed to DES because their mother was prescribed DES when pregnant. These women, called “DES daughters”, have a higher risk of developing gynaecological cancers and pre-cancerous conditions. Find out more in the DES - Gynaecological changes in exposed daughters fact sheet.

What we do

The DES Clinic provides a comprehensive annual breast and pelvic examination for DES daughters to find any early changes in the vagina, cervix or breast that might be pre-cancerous. Find out more in the DES Exposure fact sheet.

Information for patients

DES exposure

DES was a synthetic form of the hormone oestrogen from prescribed to pregnant women from the mid-1940s to the early 1970s because it was thought the drug would prevent miscarriage. It was later discovered that the drug was damaging to the future health of both the women and their babies. Find out more in the DES daughters, sons and mothers fact sheet.

DES exposure is an issue the community is still coming to terms with. It has received very little publicity and there are still only a small number of health professionals who can provide up-to-date information.

You have been told you have been exposed to DES

Most women who are told that they might have been exposed to DES will experience a range of emotions when they are given this news. You might be feeling confused or frightened. You might also feel angry or powerless, which is totally understandable.

Nobody likes to be at risk, but with up-to-date information and adequate support you can put these risks into perspective and not let them dominate your life.

Many DES daughters have found that being informed and taking an active role in their health care lessens their sense of powerlessness. Some women cope by talking with other women while others feel more comfortable with a professional counsellor.

As this is a specialised area it is important that follow-up examinations are done by professionals who are experienced in the management of DES exposed women.

The DES examination

The recommended annual pelvic examination for DES daughters involves the following:

  • A careful visual inspection and palpation (feeling) of the entire vagina
  • Separate Pap smears taken from the cervix and from the surfaces of the upper vagina
  • An internal pelvic examination
  • A breast examination

The examination may also include a colposcopy, a biopsy and a mammogram.

Pre-baby years for women exposed to DES

If your mother took DES while she was pregnant with you, there are things you should think about in relation to family planning or contraception. Find out more in the Pre-baby years for women exposed to DES fact sheet.

In summary:

  • Discuss your contraceptive choices with a doctor who is aware of your DES exposure and aware of the risks associated with hormonal contraception
  • Use the contraceptive method that you are most comfortable with, but keep yourself informed about the risk factors for DES daughters
  • If you are considering an abortion, it is advisable that you discuss the risks with your doctor.

Pregnancy for women exposed to DES

Some DES daughters will experience problems in maintaining a pregnancy. Find out more in the Pregnancy – Information for women exposed to DES fact sheet.

In summary:

  • With proper care, most DES daughters have successful pregnancies
  • Have your pregnancy confirmed early and rule out complications, e.g. ectopic pregnancy
  • Tell your doctor that you are DES exposed and make sure they are aware of the associated risks
  • Minimise physical and other stress right from the beginning and get as much rest as possible
  • Report vaginal spotting, pain, pressure, increase in vaginal discharge or any unusual symptoms immediately and stay off your feet as much as possible until examined
  • Currently, cervical cerclage (the insertion of a stitch around the cervix) is not recommended unless there are specific indications for it
  • There are no drugs currently recommended for prevention of miscarriage. Drugs might be able to stop premature labour later in pregnancy.

The later years for women exposed to DES

DES exposure might cause issues for women as they age. Currently, there are three areas in which DES exposed women might have health and treatment issues to consider. Find out more in the The later years – information for women exposed to DES fact sheet.

Menopause and Hormone Replacement Therapy (HRT)

To date, the age of menopause appears to be no different in DES exposed women. The relative benefits of HRT (with natural oestrogen and progesterone) have to be considered by all women, including DES daughters. The benefits of HRT include managing symptoms such as hot flushes, tiredness, depression and protection against osteoporosis, heart attack and stroke. DES exposed women should not be denied these benefits but as we have no long-term studies available yet (DES daughters are only now entering the age of menopause) HRT should be considered with caution.

Auto-immune diseases

Auto-immune diseases such as thyroid malfunction and rheumatoid arthritis are not common in the community, but there is a slightly higher incidence amongst DES exposed women. These diseases occur when the body’s immune system mistakenly destroys its own tissues.

Breast cancer

There is little research on the risks of developing breast cancer for DES daughters, but one study did find a slightly higher risk for DES daughters aged 40 and over. A special DES check-up every year, along with an annual clinical breast examination and mammography once you have reached 40 years, is recommended.

Referrals

Your doctor/GP will need to make an appointment for you (give you a referral) before you can come to the Women’s DES Clinic. You will need a new referral each year.

What to bring

  • A referral from a doctor/GP
  • Your Medicare card
  • Your Health Care card (if you have one)


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