How do you know if you took DES during pregnancy, or if your mother took DES while pregnant with you?
It is not known how many people in the UK are DES exposed but on a pro rata basis with research done in the Netherlands and in the US, the total number of people exposed in the UK may be as high as 200,000.
In the UK, DES was usually known as stilboestrol. However, it was sold under many brand names and was administered in both tablet and injection form, in various doses, for varying amounts of time.
People can confirm whether they were exposed if they obtain access to their medical records. A woman who was pregnant between 1940 and 1971 and had problems during pregnancy may have been given DES. If you think that you or your mother used a hormone such as DES during pregnancy, and if you are able to recall the circumstances of the pregnancy then try to contact the original doctor or hospital where the delivery took place. If you can obtain records you will then be able to confirm the dosage. However, the passage of time may mean that your medical records may not have been stored.
What are the reasons for vigilance?
In 1971 it was discovered that DES could cause a rare form of vaginal cancer. The cancer is clear cell adenocarcinoma (CCAC) found in some daughters whose mothers were prescribed DES in pregnancy.
The statistics show that about 1 in 1000 DES daughters will develop or have already developed this cancer.
The average age at which this cancer occurs is 19 years. The cancer is curable when detected early.
The symptoms of this silent cancer can relatively easily be identified with regular colposcopy and appropriate smears (see DES: physical issues).
Other symptoms include mostly benign effects but also some which are more lasting in their consequences. The most common are malformations in the reproductive tract of daughters and consequent pregnancy problems. Sons of DES-exposed mothers may have benign structural abnormalities of the reproductive tract.
In 1977 the Committee on the Safety of Medicines in the UK requested manufacturers of DES to list the contraindications to DES on all packages.
It is now only used in the UK for the treatment of prostate cancer, and is withdrawn from all other uses.
Elsewhere however, in Uganda, Nigeria, Ghana, South Africa, Mexico and Columbia, DES is reportedly still used, possibly in pregnancy.
|
|
DES mothers
DES Mothers includes women who took DES during pregnancy, but you are also in this group if you were prescribed DES for reasons other than during pregnancy, or if your pregnancy was not successful.
What does DES exposure mean for DES mothers?
Women who took DES have a slightly increased risk of breast cancer.
DES mothers may experience emotional responses which are difficult to deal with. It is not unusual for mothers to feel an understandable, but misplaced, sense of guilt for the problems that their daughters could face. Counselling as well as informed listening may often be extremely helpful. It is valuable for mothers to be able to discuss their feelings not only with their daughters, but also with other mothers.
What should DES mothers do?
- Examine your breasts regularly and have regular breast cancer screening.
- Be cautious about using Hormone Replacement Therapy (HRT).
- Some doctors believe the carcinogenic effects of hormones may be cumulative. (See DES: physical issues)
Case Study
Mary discovered the cancer when she had just given birth to her first child.
In the maternity ward at the time, the vigilant consultant gynaecologist told her what he had found and that she would need immediate surgery to save the cancer from spreading.
Mary’s view, now after nearly fifteen years have passed, is that she is delighted that it was discovered, and she now finds that offering support to other women gives her a sense of achievement. Mary knew that she was not alone and that others were affected, but it took almost ten years to find other women who also had clear cell vaginal cancer and had had a radical hysterectomy. She regularly speaks to others in the UK and in Holland where there is a strong support group.
Mary and her husband have adapted to the trauma which they have experienced and both are now able to cope. However, it took many years, and has been more manageable since they have found others in a comparable position to themselves. Mary still attends the same local hospital in which she had her child in order to receive an annual check up. She still gets nervous about the check a few days before but feels a fantastic sense of relief once it is done and she has been given the all clear.
A group of women who have been identified with, and cured of, CCA cancer are available to give support to others.
See Resources and links for details.
What does DES exposure of mothers mean for their children and grandchildren?
Sons and daughters of mothers who were exposed to DES may or may not suffer from certain effects. Grandchildren of women who were exposed to DES appear, according to information currently known, to have no effects.
What does DES exposure mean for DES daughters?
Abnormalities of the genital tract
Many, but not all, DES daughters have abnormalities in the shape of the vagina, the cervix, uterus and fallopian tubes, caused by exposure to DES. Some of these are harmless, such as an extra ridge of tissue on the cervix, a cervical hood or 'cock’s comb'. The uterus could be bi-cornuate or T-shaped, or uni-cornuate which means that it does not have the usual shape but may taper at the top. One or both fallopian tubes may not be formed or may be misshapen. These effects are usually benign, but they can have a definite impact on fertility, since conception may be possible but normal pregnancy is impeded.
Fertility and pregnancy problems
Because of the abnormalities described above, DES daughters may be at a higher risk of infertility and/or problems such as ectopic pregnancy, miscarriage and premature labour. However, where these risks are identified they can be monitored, and some problems may be averted altogether.
Cell abnormalities
Many DES daughters have adenosis. This is a type of tissue not usually found in the vagina, which can cause discharge. Adenosis usually reverts to normal tissue by the age of 40 or so. DES daughters should, however, be monitored for the presence of adenosis as changes may indicate the beginnings of CCAC. But it is important that the examining gynaecologist appreciates that such adenosis is normal for a woman who has been exposed to DES in the mother's womb.
Recent studies have raised the possibility that the risk of breast cancer may be increased in DES exposed daughters as well as mothers. However, there is limited evidence to support this view.
What should DES daughters do?
- Have annual examinations, called DES examinations, of your vagina and cervix. A cervical smear alone is not adequate for a DES daughter as vaginal abnormalities may be missed.
- Examine your breasts regularly and have regular breast cancer screening.
- Be cautious about using hormonal treatments because of the possible cumulative effects of exposure to hormones. Some doctors think DES daughters should not take the combined contraceptive pill, or receive hormonal treatment such as medicines to reduce ovulation or for in vitro fertilisation. See DES: physical issues.
What does DES exposure mean for DES sons?
Sons of mothers exposed to DES: - May suffer genital malformations, including hypospadias where the urethra opens on the underside of the penis.
- some DES sons have low sperm counts
- DES sons should regularly examine their testicles. Undescended testes at birth are more common in DES sons, and should be brought down by age two. There have been no studies to assess any increased risk of testicular cancer.
- DES sons are also at risk of benign epididymal cysts.
Children of exposed daughters and sons: the granchildren
This group is known as the third generation. At this time there is no evidence that the risk of birth defects, other abnormalities, or cancer is any greater for children of DES-exposed daughters and sons than for any other children. However, because of the possibility of premature birth for DES daughters, the concomitant risks of early births must be carefully monitored during pregnancy and labour.
This has been a source of concern for many DES mothers, some of whom are now entering grandmotherhood.
Pat is one such woman, who was given DES by a nurse who thought it would help her to abort. There is no such evidence, and Pat went to term.
Her daughter has just had her second child. Pat is absolutely thrilled, but she still has some reflective moments about DES.
How to address the problem - talking to family about DES
If you would like to talk to your mother about DES you may have to ask her several questions concerning whether you were exposed.
Michelle addressed the problem this way:
'Mum, you remember when you were trying to get pregnant did you go to your doctor to help you medically’.
Michelle’s mother answered that indeed DES was given as injections right through until, at three months, she discovered that she was pregnant. So, it seemed to Michelle’s mother that she had not taken anything during pregnancy because she stopped as soon as she discovered she was pregnant. She did not identify it as DES and like most women had not heard of DES at the time.
Your mother could also have been given something after a miscarriage, to regulate periods, to alleviate diabetes or to help with premature birth. DES actually did none of those things but the medical profession at the time believed in its efficacy.
If you are a mother who wishes to raise the subject, then do so. Knowing about DES can help adult children to take steps to protect their health.
Complete information helps people to make the right health care choices and receive proper care.
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.
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:
- A careful visual inspection and palpation (feeling the entire vagina).
- Separate smears from the cervix and from the surfaces of the upper vagina.
- 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:
- 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.
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.
DES: Resources and links
This section offers a range of organisations, books and other resources addressing a wide range of issues concerning DES.
DES Action Groups
DES Action groups were founded in 1975 in the US, 1980 in Australia, 1981 in the Netherlands, 1982 in Canada and 1987 in France.
In 1989 Channel 4 featured DES in the consumer programme 4 What It’s Worth. More than 500 inquiries resulted, and DES Action UK was born. There are now five regional groups in the UK.
The aims of DES Action groups are to help those exposed to DES to be aware of their exposure, and to provide information, doctors’ referrals and counselling support. The group initiates publicity and awareness campaigns aimed at those who may be DES exposed, the medical profession and the government.
UK Contacts
DES-exposed women may wish to contact one of DES Action UK’s volunteers. DES Action UK volunteers are available in North East England, South West England, Scotland and Wales.
DES Action UK
PO Box 128
Blaydon LDO
Tyne and Wear NE40 3YQ
email: mail@des-action.org.uk
website: www.des-action.org.uk
Their newsletters can be found online at: www.des-action.org.uk/DES_Comp/allnews.htm
Other Contacts
DES Action USA
610 16th Street, Suite 301
Oakland, CA 94612
USA
e-mail: desact@well.com
website: www.desaction.org
DES Cancer Network
Suite 400
514-10th St. N.W.
Washington DC 20004-1403
USA
e-mail: desnetwrk@aol.com
website: www.descancer.org
This is a support group for DES daughters who develop clear cell cancer.
Recommended Reading
To do no harm: DES and the dilemmas of modern medicine by Roberta J Apfel and Susan M Fisher
(1984), Yale University Press.
Our stolen future by Theo Colborn, Dianne Dumanski and John Peterson Myers
(1996), Abacus.
Both books are easy to read and give a personal and social insight into some of the medical questions associated with DES exposure.
Our stolen future looks also at other medical dilemmas; To do no harm, by contrast, is exclusively about DES, and considers the emotional response which each group of DES-exposed people has to DES. A psychologist explains some of the attitudes exhibited by GPs and consultant specialists in their treatment of mothers, daughters and sons. It is a most helpful description of each personal response to the discovery of DES exposure and the way that people best cope.
|