The DES Follow-up Clinic at the Women’s
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 at the DES Clinic
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 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 cervical smears (and the new HPV test) are taken from the cervix and upper vagina annually
- 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:
- 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.
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 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.
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.
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
Downloads and Related Topics
This information is for women who have recently been informed that they may have been exposed to DES (di-ethyl-stilboestrol or stilboestrol). This DES exposure fact sheet discusses the importance of being under the care of medical professionals experienced in DES exposed women and the treatments and examinations they will need.
- DES exposure
DES - Gynaecological changes in DES exposed daughters
Women whose mothers were prescribed DES (di-ethyl-stilboestrol or stilboestrol) during pregnancy may experience a number of gynaecological changes. This fact explains what DES related problems may arise in DES exposed women.
- DES - Gynaecological changes in DES exposed daughters
A colposcopy is an examination which is recommended after some positive or abnormal cervical screening test results. Your local doctor (GP) will discuss these results with you. After a colposcopy, decisions can be made about whether treatment is needed or not.