You have recently been informed that you may have been exposed to DES; that is, your mother was prescribed DES when she was pregnant with you.
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Most women will experience a range of emotions when they are given this news. You might be feeling confused or frightened. You may also feel angry or powerless which is totally understandable.
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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 limited number of health professionals who can provide up-to-date information.
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Over the years a great deal has been revealed about DES exposure however there is still the possibility that long-term effects will emerge in years to come. This means DES daughters require ongoing monitoring for the rest of their lives.
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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.
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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.
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What medical treatment will I require?
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You will need to have regular examinations throughout your life. 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.
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Never accept any medical intervention, no matter how minor, without being sure that it's absolutley necessary. If in doubt get a second opinion.
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What does the DES examination involve?
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The recommended annual pelvic examination for DES daughters involves the following:
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- a careful visual inspection and palpation (feeling) of the entire vagina
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- separate Pap Smears taken from the cervix and from the surfaces of the upper vagina
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- an internal pelvic examination
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The examination may also include:
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A Colposcopy
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This is an examination that uses a special optical device called a colposcope to magnify the view of the cervix. This examination is non-invasive, as no part of the colposcope will touch you. Staining the vagina and cervix with an Iodine solution (brown liquid) may occasionally be necessary.
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A Biopsy
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If, on examination, it is found that changes have occurred in the vagina or the cervix and your doctor believes that further examination is required, a biopsy will be taken from the affected area. This involves taking a sample of tissue from the cervix or the vaginal wall. The procedure may be slightly uncomfortable and there may be some slight bleeding afterwards.
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Mammograms
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Research is limited on the risks of developing breast cancer for DES daughters, but a 2006 study found a slightly higher risk in DES daughters aged 40 and over. A special DES check-up every year, along with annual clinical breast examination and mammography, once you have reached 40 years of age, is recommended.
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Where to get more information
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Royal Women's Hospital
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The DES Follow Up Clinic
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Locked Bag 300
Grattan St & Flemington Rd
Parkville VIC 3052
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Tel: (03) 9221-5077 for an appointment.
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All patients of the DES Clinic require a medical referral from a general practitioner and their Medicare card.
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Women's Health Information Centre (WHIC)
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Tel: (03) 8345 3045 or 1800 442 007 (rural callers)
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Other contacts
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DES Action, Australia
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P.O.Box 282, Camberwell , VIC, 3124
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Web: http://www.desaction.org.au
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Other Royal Women's Hospital fact sheets about DES
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Disclaimer
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The Royal Women’s Hospital does not accept any liability to any person for the information or advice (or use of such information or advice) which is provided in this fact sheet or incorporated into it by reference. We provide this information on the understanding that all persons accessing it take responsibility for assessing its relevance and accuracy. Women are encouraged to discuss their health needs with a health practitioner. If you have concerns about your health, you should seek advice from your health care provider or if you require urgent care you should go to the nearest Emergency Dept.
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Last updated Jan 2008
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