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DES: Physical issues to consider, including physical examinations, HRT and the menopause

General awareness of DES
As the use of DES in the UK is now forbidden during pregnancy, neither the medical profession nor the public are generally aware of the consequences of DES exposure.

DES is considered to be an issue of the past and no link has been made with the current health problems and needs of the DES exposed. As a result, only a minority of DES exposed individuals receive the appropriate information and medical care they need.

The problem of DES is on going. Third generation effects are not yet known. There may also be women who are both DES daughters and DES mothers.

There is no upper age limit for the development of clear cell cancer in DES daughters. Daughters in their late 40s in the US are developing this disease. Accordingly, DES daughters need the special DES exam at least once a year for the rest of their lives.

Unfortunately, very few records of drugs prescribed in the UK between fifteen and fifty years ago remain.

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Introduction: what is DES?
DES mothers
Children and grandchildren of DES mothers
DES: physical issues to consider
DES resources and links
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It may also be difficult to ask your mother whether she was given any drugs during pregnancy (see Talking to family about DES). It is important that anyone who thinks that they may be DES-exposed demands and receives the appropriate medical examination and care.

Physical examinations

The correct exam always includes:

  1. A careful visual inspection and palpation (feeling the entire vagina).
  2. Separate smears from the cervix and from the surfaces of the upper vagina.
  3. A bimanual exam (the examiner feels the uterus, tubes, and ovaries with the fingers of one hand inside the vagina and the other hand on the abdomen).

An examination may also include:

  1. Iodine staining of the vagina and cervix (normal tissue stains brown).
  2. Depending on the results of these tests, further procedures may be necessary, such as colposcopy and biopsy.
    Colposcopy is examination of cells from all four vaginal walls and the cervix, using a colposcope, a large 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.

HRT and the menopause - is taking HRT safe for those who have been DES exposed?

Each woman should discuss this important question with her doctor. Both DES mothers and daughters may face this decision.

A significant proportion of women who were exposed to DES in utero (in their mother's womb) are now reaching their menopause and are understandably unable to decide whether to take HRT in order to benefit from its effect on mood and brittle bones. Both of these effects are considered problematic for some women who are experiencing the menopause.

There have been few studies in this area both because of the relative newness of HRT and because the group of menopausal DES daughters is not yet large.

The research which has been carried out so far has not shown whether HRT is safe for either group of DES exposed mothers or daughters. HRT has been shown to have a relatively small effect on women’s life expectancy and it does lower the risk of heart disease and hip fractures by small amounts. On the negative side HRT does slightly increase women’s risk of stroke and breast cancer. However for DES- exposed women, exposure to oestrogen may need to be limited. There is a lack of research supporting the safety of long term use of this therapy.

Other methods of alleviating menopausal symptoms do exist. Alternatives to hormone therapy include eating a balanced diet in advance of the menopause to develop stronger bones and to prevent osteoporosis. The diet should include fresh vegetables and fruit and adequate calcium. A sensible diet should be continued both during and after the menopause. In addition, studies for the whole population as well as DES women indicate quite clearly that exercise is an effective way of strengthening bones and of improving mood. See the Women’s Health leaflet Menopause for more information.

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SOME OF THE INFORMATION ON THESE PAGES HAS NOW BEEN SUPERSEDED

Written by Michelle Cowen, DES Action UK
and published in printed format (1998) by Women's Health


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