desact@vicnet.net.au
|
||
| DES ACTION AUSTRALIA | HOME | Contact DES: desact@vicnet.net.au |
|
||
|
|
Overview of DES This represents an overview of DES-related health outcomes for DES mothers. It is based on our interpretation of the medical research available (very little, in relation to DES mothers), the results of our small 1997 'Health Survey', and the personal experiences and testimonies of members over the years. We are not saying that there is a direct causal link between DES exposure and these health outcomes, rather that there appears to be a pattern of association. There is great individual variation when it comes to the long-term effects of an endocrine disruptor. Many DES mothers will sail through life experiencing few, if any, of these health outcomes. Others may be profoundly affected in one area, but not in others. It all depends on the timing of the exposure and the individual's own chemical defence system - whether it is vulnerable to the potential disruption. Breast Cancer There was always a suspicion that DES mothers have an increased risk of breast cancer. This suspicion was based on the many experimental animal studies carried out from the 1930s onwards, on the sophisticated mouse modelling studies, and also simply on what is known about oestrogen. A study of the Dieckmann study cohorts of DES mothers and unexposed mothers, published in 1984, revealed that the DES mothers, at that time, had a 40-50% increased risk of breast cancer compared to the unexposed group. Further, the authors noted that those DES mothers who developed breast cancer tended to develop a more aggressive form of the disease, and at an early age, than the unexposed mothers who developed the disease. Recently there has been a suggestion that DES exposed women may be better off to avoid taking the breast cancer treatment drug tamoxifen. The 1978 ( US) DES Task Force recommended that DES mothers should avoid taking additional oestrogen in the form of HRT. Other Cancers Of our small survey of 80 DES mothers, 10% had breast cancer. There were 4 cases of bowel cancer, 3 of lung cancer, 2 of liver cancer, and 1 case of brain cancer. There was also a case of a very rare form of leukaemia, and a rare form of vulva cancer. Other Health Outcomes Other reproductive systems conditions included: 24% with fibroids, 24% with cystic breasts, and 19% reported premature menopause. 44% had arthritis; 46% reported allergies, 34% had kidney and bladder problems;14% had asthma, and 8% had diabetes. Another noticeable finding was that 29% reported suffering from depression, including major depressive illness requiring hospitalisation. Typically the depression occurred after the DES exposure but before finding out about their DES status i.e. before finding out about the health outcomes associated with DES exposure. Chronic fatigue syndrome was reported by 13%, while 20% reported stress-related conditions. Further reading:
This represents an overview of DES-related health outcomes for DES daughters. It is based on our interpretation of the medical research available, the results of our small 1997 'Health Survey', and the personal experiences and testimonies of members over the years. We are not saying that there is a direct causal link between DES exposure and these health outcomes, rather that there appears to be a pattern of association. There is great individual variation when it comes to the long-term effects of an endocrine disruptor. Many DES daughters will sail through life experiencing few, if any, of these health outcomes. Others may be profoundly affected in one area, but not in others. It all depends on the timing of the exposure and the individual's own chemical defence system - whether it is vulnerable to the potential disruption. Clear cell cancer of the vagina/cervix All DES daughters have a life-time risk of this clear cell cancer (adeno-carcinoma). It is a symptomless, aggressive cancer that requires specialised screening, as a routine Pap smear will not detect it. There is a suspicion that there will be a "second wave" of clear cell cancer of the vagina/cervix, i.e. that the incidence of the cancer will increase as DES daughters pass through menopause. Other reproductive tract conditions Many DES daughters have DES-related tissue changes to the vagina: glandular tissue called adenosis or, in Australia, the term metaplasia is used. This is a benign (non-cancerous) condition but it needs to be monitored in case it changes into dysplasia. There are also structural abnormalities of the uterus and fallopian tubes linked to DES exposure, including a characteristic T-shaped uterus and "withered" fallopian tubes. These are "markers" of DES exposure. DES daughters have an increased incidence in a range of other gynaecological conditions including dysplasia and squamous-cell cancer of cervix, menstrual problems, endometriosis, ovarian cysts, hyperplasia, pelvic inflammatory disease, early menopause and prolonged menopause. Breast cancer There has always been a suspicion that DES daughters are at higher risk of developing breast cancer. This suspicion was based on the many experimental animal studies carried out from the 1930s onwards, on the sophisticated mouse modelling studies, and also simply on what is known about oestrogen. Breast examination has always been part of the recommended annual DES Screening and DES daughters are urged to undertake monthly breast self-examinations. We have noted over the years that, of the DES daughters who developed breast cancer, many seemed to develop it at a young age, and develop an aggressive form of the disease. Recent research, again using the Dieckmann cohorts, indicates DES daughters in the 40-49 age group have 2.5 times the risk of breast cancer compared to the unexposed daughters, and this risk is expected to increase with age. Recently there has been a suggestion that DES daughters may be better off to avoid taking the breast cancer treatment drug tamoxifen. The 1978 ( US) DES Task Force recommended that DES daughters should avoid taking additional oestrogen in the form of the oral contraceptive pill. This advice obviously can now be extended to include caution in taking HRT. Infertility & Pregnancy Complications Probably the most devastating effect on DES daughters has been in the area of infertility and pregnancy outcomes. DES daughters experience a significantly higher rate of infertility, with a "never pregnant" rate of 24% . This "never pregnant" rate varies between 20 - 30%, depending on the timing of exposure. Of those able to conceive, over 50% will experience pregnancy complications, including much higher rates of ectopic pregnancy , first trimester miscarriage, mid-trimester pregnancy loss (another "marker" of DES exposure, as it is relatively rare in the general population) and premature labour. Of DES daughters able to conceive, approximately 20% never have a child. This is readily apparent from our 1997 'Health Survey' of DES daughters: Out of 75 daughters attempting to become pregnant, 56 achieved pregnancy. However of these 56, only 36 have children. Other Health Outcomes In recent years, as many of us enter middle age and go through menopause, we are experiencing the onset or increased severity of a range of autoimmune conditions and other health problems. We also appear to have high rates depression, chronic fatigue, severe mood swings, anxiety attacks, stress related conditions and attention deficit problems. Often central to many of our health conditions is thyroid dysfunction, and we have found that the routine thyroid function test does not pick up this condition. It is crucial to have a correct diagnosis. We have found that at least some of these bewildering symptoms and conditions may be the result of simple imbalances or dysfunctions, which are then exacerbated by wrong diagnosis. Further reading: This represents an overview of DES-related health outcomes for DES sons. It is based on our interpretation of the medical research available (very little, in relation to DES sons), and the personal experiences and testimonies of members over the years. We are not saying that there is a direct causal link between DES exposure and these health outcomes, rather that there appears to be a pattern of association. There is great individual variation when it comes to the long-term effects of an endocrine disruptor. Many DES sons will sail through life experiencing few, if any, of these health outcomes. Others may be profoundly affected in one area, but not in others. It all depends on the timing of the exposure and the individual's own chemical defence system - whether it is vulnerable to the potential disruption. Structural abnormalities of reproductive tract Like DES daughters, many DES sons also have structural abnormalities of the reproductive tract. These include epididymal cysts, hypospadias, undescended testes and hypoplastic (small) testes. Cancer Undescended testes are a known risk factor for testicular cancer. There is a suspicion that DES sons have an increased risk of prostate cancer, and that this risk will increase further with age. Infertility & Impaired Reproductive Capabilities Undescended testes, epididymal cysts and hypoplastic testes are all associated with male infertility. A 1979 clinical study of the Dieckmann cohorts indicated that over 30% of DES sons had structural changes to their reproductive system and possibly compromised fertility. The range and severity of the conditions appears to be linked to the timing of exposure. Exposure to DES at a crucial time of development has a profoundly adverse effect on sperm production and quality of sperm. The good news is that DES sons in this situation may be help by IVF techniques (or assisted reproduction is now the preferred term) which appear to be more successful with male infertility than female infertility. These techniques range from low tech (donor sperm) to high tech (injection of individual sperm into an ovum). The bad news is that male fertility is more complex than just sperm counts or quality. There can also be an autoimmune component, which has obvious implications for DES sons. Other Health Outcomes No research has been done on whether DES sons also have impaired functioning of the immune system function, increased autoimmune disease or any of the other health outcomes now being associated with DES exposure. It is very unlikely that an endocrine disruptor would be gender selective. Further reading: This represents an overview of DES-related health outcomes for DES grandchildren. It is based on our interpretation of the medical research available (very little, in relation to DES grandchildren), and our mutually shared observations. We are not saying that there is a direct causal link between DES exposure and these health outcomes, rather that there appears to be a pattern of association. There is great individual variation when it comes to the long-term effects of an endocrine disruptor. Hopefully most DES grandchildren will sail through life experiencing few, if any, of these health outcomes. Others may be some effects, but not in others. It all depends of the timing on the exposure and the individual's own chemical defence system - whether it is vulnerable to the potential disruption. Animal research, using sophisticated modelling techniques, show that DES "granddaughter" and "grandson" mice developed reproductive tract cancer, but did not have impaired fertility. A small preliminary study in the Netherlands on sons of DES daughters showed that the DES grandsons had significantly higher rate of hypospadias compared to a control group. Those of us that are parents are very concerned about the possibility of 3rd generation effects, in terms of cancer but also other conditions. Our children are in the teenage to mid 20s range and we have noted patterns of poly cystic ovary syndrome; menstrual problems; asthma; clinical depression in early teens; severe mood swings; specific learning difficulties, attention deficit conditions; panic attacks and anxiety conditions; skin and other allergies; and weight problems. Further reading:
|
 |
|
|
||
|
|