DES daughters
You are a DES daughter if your mother took DES while she was pregnant with
you. DES daughters have an increased incidence of structural changes in their
reproductive organs. Many of these changes are not dangerous, but they may
cause a higher risk of:
- miscarriage
- ectopic (tubal) pregnancy
- premature labour and delivery
- infertility
Most DES daughters can have children, but all DES daughters require monitoring
and special medical care in pregnancy, as well as early confirmation of pregnancy.
Cancer Risks
A small number of definite DES daughters (about 1:1000) develop a rare cancer
of the vagina or cervix called clear cell adenocarcinoma. The usual Pap test
may not detect this cancer and so DES daughters need a special "DES exam" every
year throughout their lives. DES daughters also have greater risks for other
vaginal/cervical cancers. To get the best treatment it is important that you
see a specialist experienced in the care of DES exposed people. Advice may
be sought from the Australian resources listed.
DES daughters over age 40 are at increased risk of developing breast cancer and are advised to practice monthly breast self-exam and have annual clinical breast examination and mammography.
[References: Prenatal diethylstilbestrol Exposure and Risk of Breast Cancer – Julie R. Palmer et al (Cancer Epidemiol Biomarkers Prev 2006;15(8):1509-14), www.bci.org.au/public/news/media/0806_media.htm ]
The Yearly "DES Exam" for DES Daughters
The DES examination involves:
- A careful visual inspection and palpation (feeling) of the entire vagina.
- Separate Pap smears from the cervix and from the surfaces of the upper
vagina.
- An internal pelvic examination
This examination may also include iodine staining of the vagina and cervix
(normal tissue stains brown). Depending on the results of these tests, further
procedures may be necessary, such as colposcopy and biopsy.
Note: A colposcopy is done with a colposcope, a
device that works like a magnifying glass. It is placed on a stand between
you and the doctor and does not enter your body. A biopsy is when a small
piece of tissue is removed for study under a microscope.
Many DES daughters prefer to steer clear of taking additional hormones like "the
pill" or HRT, since it is thought that the oestrogen could increase their cancer
risks. Discuss the risks and benefits with a doctor. Some studies have shown
an increased incidence of autoimmune diseases (such as lupus, rheumatoid arthritis,
Grave's disease) among DES daughters.
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