DES EXAMINATION EXPLAINED

The organisation, DES Action NSW is often asked about this procedure. Here is some information for you.

Although the incidence of the rare cancer, clear cell adenocarcinoma of the cervix/vagina is small in DES daughters (about 1:1,000), the “DES examination” is recommended every year throughout their lives. The reasons are: the usual Pap test may not detect this cancer, this cancer type is aggressive and should be detected early, and there is no known upper age limit for this cancer’s occurrence. To get the best treatment, see a specialist experienced in the care of DES exposed people. (Specialist listing at blog article 11/2/09)

The DES examination is similar to the Pap test procedure, but the differences are important. It involves:

• A careful visual inspection and palpation (feeling) of the entire vagina.
• Separate Pap smears from around the outside of the cervix and from the entire upper vaginal walls (4-quadrant smears).
• 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. At your first DES examination, your specialist may consider a colposcopy to be a good idea in providing a baseline for future management.
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.

DES daughters who have annual DES examinations can safely forgo the recommended two yearly Pap test as for the general population. In 2008, a US study of 3,140 DES exposed women showed, astonishingly, that a third of these women are not receiving their recommended annual DES examinations.

DES BRANDS GALORE

Never patented, the synthetic oestrogen DES was marketed by many pharmaceutical companies. In fact, there were over 200 brand names for the drug. It was usually given in tablet form, but sometimes as injection, vaginal suppositories or combined in vitamin supplements.
It should be noted that DES was also used to stop breast-feeding after giving birth and this is not known to cause any problems. In the latter years of DES usage, another hormone called progesterone was more commonly used in pregnancy, but this hormone is not known to cause any problems.
In 2006, DES Action NSW sought a listing of Australian DES brands from Melbourne’s Royal Women’s Hospital Pharmacy Department. This list, although not exhaustive, may be useful for women who can recall being given some type of medication during pregnancy in the period of DES usage: 1938-1971 (and sometimes beyond). We are pleased to have received the following information:

The list below is some of the brands and generic names of products available in Australia and is not exhaustive, as there is no complete listing (ie, a list which contains all the generic and proprietary drug names that were available during the period 1940-1972).

List 1 - Products containing stilboestrol and hexoestrol
These drugs are more likely to have been prescribed for habitual abortion, threatened abortion, prevention of toxaemia, or diabetes in pregnancy and they have been linked to cervical or vaginal changes of the 'DES syndrome'.
Brand name (Generic name in italics)
Antigerant Hexoestrol
Clinestrol Stilboestrol
Cryogene B Stilboestrol Dipropionate
Cyrogene A Stilboestrol
Diesavite Stilboestrol
Euvalerol M Stilboestrol
Honvan Stilboestrol Diphosphate
Menotone Stilboestrol
Neo-oestranol Stilboestrol
Oestrogenine Hexoestrol
Pabestrol Stilboestrol
Pabestrol D Stilboestrol Dipropionate
Synthovo Hexoestrol
Thyboestrol Hexoestrol

List 2 - Products containing oestrogenic compounds
These products were available during the period in question but are less likely to have been used for pregnancy related problems and possibly be linked to 'DES syndrome'.
Brand name (Generic name in italics)
Ambigen Ethinyloestradiol & Methyltestosterone
Amenorone Ethinyloestradiol & Ethisterone
Amenorone Forte Ethinyloestradiol & Ethisterone
Barboestrol Ethinyloestradiol, Phenobarb & Papervine
Climatost Ethinyloestradiol, Methyltestosterone & Amphetamine Sulphate
Dienobarb Dienoestrol
Disecron Oestrodiol Monobenzoate & Progesterone
Duogynon injections Oestradiol Benzoate & Progesterone
Duogynon oral Ethinylosetradiol & Noresthisterone
Enavid Ethinyloesrtadiol 3-Methyl Ether & Norethynodrel
Estigyn Ethinyloestradiol
Estigyn Elixir Ethinyloestradiol
Estinyl Ethinyloestradiol
Ethidol Ethinyloestradiol
Eticyclin Ethinyloestradiol
Femandren Ethinylostradiol & Methyltestosterone
Lut-Ovocyclin Oestradiol Dipropionate & Progesterone
Menoform injections Oestrone
Menoclimax Dienoestrol
Menstrogen injections Ethinyloestradiol & Progesterone
Menstrogen tablets Ethinyloestradiol & Ethisterone
Mepilin Ethinyloestradiol & Methyltestosterone
Mepilin Elixir Ethinyloestradiol & Methyltestosterone
Mestrone Ethinyloestradiol & Methyltestosterone
Mixogen Ethinyloestradiol & Methyltestosterone
Neo-oestrogenine* Dienoestrol
O.C.P** Dienoestrol
Oestroform Preparations of "Pure natural Oestrogenic Hormones"
Oestroform Aqueous Oestradiol Monobenzoate Suspension
Oestrogenine compound** Dienoestrol
Oramen Ethinyloestradiol & Ethisterone
Orasecron Ethinyloestradiol & Ethisterone
Ovestin Oestradiol
Ovocyclin Oestradiol Dipropionate
Pausandryl Ethinyloestradiol & Methylandrostanolone
Premarin Conjugated Oestrogens (Equine)
Premarin with Meprobamate Conjugated Oestrogens & Meprobamate
Premarin with Methyltestosterone Conjugated Oestrogens & Methyltestosterone
Primodian Ethinyloestradiol & Methyltestosterone
Primodian Depot Oestradiol Valerate & Testosterone
Primogyn C Ethinyloestradiol
Primogyn Depot Oestradiol Valerianate
TACE Chlorotrianisene
Theelin (capsules, ointment, pessaries) Oestrone
Vallestril Methallenoestrol
Viraxasterol Dienoestrol

* Products more likely to have been used for problems in pregnancy
**In 1963 the formulation of these products were altered. From that time, the hormonal component has been ethinyloestradiol

Non-Australian DES type products list is also available at the American CDC website for consumers:
http://www.cdc.gov/des/consumers/about/history.html (JAMA 236(10): 1107-1109, Sept 1976).

A REAL MULTICULTURAL AFFAIR

There would be people residing in Australia who were DES exposed in overseas countries and in some of these countries, DES usage in pregnancy extended well beyond 1971. We also have reports of DES usage in pregnancy in Australia in the mid 1980s. Here is a listing of some countries involved: USA, Canada, Ireland, France (usage peaked 1976), UK, Netherlands, New Zealand, Belgium, Czechoslovakia, Finland, Germany, Italy, Norway, Portugal, Spain and Switzerland. Lately, our organisation has heard of cases in Philippines, Israel, Mexico, New Guinea, Malaysia, Kenya, Namibia, Nairobi, India (reported usage 1975), Indonesia, Egypt, Russia, Germany (1973) and Poland (as late as 1991).

At a 1992 symposium held in Sweden [J. Psychosom. Obstet. Gynaecol. 14 (1993) 71-89], concerns were raised that DES might still be given to pregnant women in many parts of the world, including East and Central Europe, Africa, Asia and Latin America. Those present called for measures to alert medical professionals world-wide to the hazards of the use of DES, and requested measures to effect an international ban of DES in medication for pregnant women.

In the late 1990s our organisation DES Action NSW, upsettingly, received reports of current DES usage in pregnancy from overseas doctors who are employed or studying in Australia. In one scenario, our organisation was presenting a general talk to overseas doctors about the role and function of community support groups. Upon receiving information about the hazards of DES for the first time, a number of these doctors were understandably traumatised through their knowledge of the current practice of DES usage in pregnancy in their respective countries. The countries involved were Pakistan, Bangladesh and Sri Lanka.

So far, our organisation has found no evidence of any actions addressing the very serious concerns raised at the 1992 Swedish symposium.

INTERNATIONAL DES ACTION CONTACTS
DES Action USA website (www.desaction.org) has a listing of related organisations outside USA. DES Action NSW is listed.

NEW BOOK FOR YOUR READING LIST!

Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry’s Quest to Manipulate Height

By Susan Cohen & Christine Cosgrove (ISBN 978-1-58542-683-6)

For decades, controversial treatments have been prescribed for children who fall outside a height range considered “normal”. Some children have benefited, some have not achieved desired effect, but others continue to suffer devastating side effects. DES was one of these treatments used to inhibit growth in young girls (already unusually tall) from the 1950s to the mid 1970s and there is concern about its effects. In 2004 the first real research was undertaken in Australia and this showed that girls prescribed DES to stunt growth have greater risk of infertility.
Science journalist, Susan Cohen and Christine Cosgrove, a WebMD contributor, both from USA, offer their riveting book detailing attempts to manipulate the height of children and the ethics of these experimental treatments. Doctors, drug companies and others who should know, freely admit there is no way, except in rare instances, of predicting anyone’s height at maturity. The motives of all the key players - parents, doctors and drug companies are questioned. The stories of the boys and girls themselves are told, many of them now grown and who were subjected to a wide range of non-FDA approved medical procedures. These consisted of extremes doses of oestrogen, pituitary glands taken from both animals and human cadavers, and testosterone injections, often with disastrous side effects.

In USA, it is estimated that thousands of tall girls were prescribed DES – often 100 times the amount of oestrogen delivered in a high dose birth control pill – daily over a period of years. These doses sent them prematurely into puberty and forced their growth plates to close. There are treated girls now in their 30s, 40s, 50s and 60s who blame these huge oestrogen doses for their myriad of health problems – including weight gain, ovarian cysts, miscarriages, blood clots, endometriosis, depression and infertility. In the early 1970s doctors switched tall girls over to different types of oestrogen when DES was found to cause cancer in the offspring of women prescribed it during pregnancy.

The book includes the plight and eventual success of the Australian group, Tall Girls Inc (chaired by Janet Cregan-Wood) in their demand for a DES follow-up study. The Australian researchers, who tracked down several hundred women and their parents, discovered that some families were still unable to talk about the subject. One woman said her teenage daughter had run away years earlier rather than take the pills, and she beseeched the researchers to let her know if they found her.

Cohen and Cosgrove pull no punches in this book. They note there have been many more incentives to encourage treatment with hormones than to study the drugs’ long-term effects.

Why aren't authorities telling about DES?

“....a general publicity campaign for DES-exposed people to identify themselves would create community anxiety without tangible benefit.” [Correspondence 12/10/99 by former Minister for Health and Aged Care, Dr Michael Wooldridge]

“The advice provided by the Department in 2005 that it is not appropriate for information on DES to be included in breast and cervical screening program correspondence to participants, as it could create unnecessary anxieties for women who may not know if they have been exposed to DES, is still current.” [Correspondence 16/2/09 by Senator the Hon Jan McLucas – Parliamentary Secretary to the Minister for Health and Ageing]

COMMENT
DES exposure is a serious public health issue affecting a considerable number of Australian people (approx 68,000-156,000 DES mothers, daughters and sons). The above stance by government beggars belief, especially where if similar statements were said of other issues, for example, asbestosis, lead-based paint, tobacco or even tainted food products, there would be public outcry. In Australian public health information, DES takes a very poor background position where one has to magically know about DES in the first instance to search the DES topic. The government frequently vaguely states that DES exposed women should be encouraged to see their doctor for specific management and surveillance, but there is no effective encouragement forthcoming. The DES issue for women who may not know if they have been exposed to DES has been effectively managed in USA with the Interactive DES Self-Assessment Guide (http://www.cdc.gov/des/consumers/guide/index.html ).

It is stated in the NSW Cancer Council Diethylstilboestrol (DES) and Cancer Position Statement (www.cancercouncil.com.au/editorial.asp?pageid=248) that many people remain unaware of their exposure and the potential adverse health effects of DES. There is inherent failure by government to recognise this vital point. As recently as last weekend, in an extremely short space of time at the Breast Cancer Network’s forum in Sydney, through the representation of DES Action NSW, 3 DES mothers learnt for the first time about the effects of DES and the possible association of their breast cancer diagnosis to DES. They had no prior knowledge of the special need of DES mothers to have annual mammography. In the organisation’s experience, instances as this are too frequent and beg the question “How many more people are unaware?” The DES tragedy becomes a double whammy where DES exposed people and their families have been deprived of accessible information for their vital reproductive and cancer preventive health care – a doubling of the tragedy that is largely preventable with responsible government action. Indeed, anxiety can be created by not telling.

The unfairness and injustice of having been DES exposed pales into insignificance compared to the unfairness and injustice in needing to challenge authorities for responsible action. When confronting Australian government on the DES issue, it always bears considering that the Therapeutic Goods Administration is 100% funded in fees by the pharmaceutical industry. Here lies the ongoing challenge for the organisation DES Action NSW.

ARE YOU ANGRY?

There are many aspects of DES exposure that can make us angry. DES Action NSW, especially during DES Awareness Week June 1-7 (on NSW Health Calendar), encounters many DES exposed enquirers who feel angry that they have only recently learnt about the dangers of DES. It is even sadder when these DES exposed people have learnt of the fact of their exposure only by chance through the volunteer organisation, DES Action NSW’s modest unfunded media campaigning.

Many people ask why the public hasn’t been told about DES and this raises complex questions about government since 1971 and questions about the reasoning for the non-existence of an ongoing government publicity campaign about DES. In spite of all available evidence, DES exposure is hardly ever mentioned as a risk factor in public health information about cervical and breast cancer (cancer information at the forefront), but appears mostly in vaginal cancer information (cancer information in a more background position). DES specific information is in the background and one must know about DES or one’s own exposure in the first place to know to search for this. Aside from clear evidence, the strong argument for the inclusion of DES exposure as a risk factor in public information about cervical, breast and vaginal cancer is found in the Cancer Council NSW DES and Cancer Position Statement (www.cancercouncil.com.au/editorial.asp?pageid=248) where it states that many people remain unaware of their exposure. Placing DES exposure information as far as possible in the forefront of public cancer information is a potentially life-saving public service and is overdue.

The kind of inconsistency in DES information described above is found across all state Cancer Councils. In response to DES Action NSW’s concerns, it is pleasing news that the Cancer Council NSW has decided to consult the Public Health Committee of the Cancer Council Australia about ensuring information about DES risks and the associated screening recommendations for breast and cervical cancer are consistent and present, particularly in breast and cervical cancer screening information.

There is similar inconsistency in the Australian Breast and Cervical Screening Program websites and DES Action NSW has forwarded this concern to the government Cancer Screening department.

DES EXAMINATIONS

Where can DES daughters go for their annual DES examinations?

The organisation DES Action NSW is often asked this question by enquirers. It is best for DES daughters that annual DES examinations are conducted by DES knowledgeable specialists. In 2007 the organisation finally received a listing of DES knowledgeable doctors from the Royal Australian & New Zealand College of Obstetricians & Gynaecologists (RANZCOG). [Note: RANZCOG has ignored subsequent requests for an updated list. Unfortunately some of the specialists listed may be no longer in practice.] We always need the names of healthcare providers who are informed about DES and sensitive to the needs of their patients. If you have such a recommendation, let us know by emailing c_devine@bigpond.net.au

DES Action NSW
Health Provider Resources for DES exposure healthcare (Jan 08)

Annual Mammography
Public: For BreastScreen clinic, initial letter to your area’s director is suggested (see blog entry Jan 17, 2009 Important Message about Breast Screening). 
Private: Sydney Breast Clinic (GP referral) Lev 12, 99 Bathurst St Sydney Ph 1300653065 *

* Recommendation of a DES daughter

NSW

Dr JC Dalrymple 100 Carillon Ave Newtown Ph 95193053
188/2a Hollywood Ave Bondi Jn Ph 93895188
193 Macquarie St Sydney Ph 93895188
Public colposcopy clinic RPA Hosp (Wed AM) Ph 95155270 (GP
referral and booking required)
Prof DE Marsden Gynaecological Cancer Centre Royal Hospital for Women
Barker St Randwick
Dr G Robertson Gynaecological Cancer Centre Royal Hospital for Women
Barker St Randwick
Dr Chris Hunter North Shore Pvt Hosp Lev 3 Suite 3a Westbourne St St Leonards
Ph 94397210
Public Gyn Clinic North Shore Hosp (Tues AM) Ph 99267215 (GP
referral and booking required)
Public Women’s Health Clinic, Westmead Hospital (alternate Thursdays) Ph98455555
(GP referral and booking required)
Dr Sue Valmadre, Suite 102, The Mater Clinic, 3-9 Gillies St North Sydney Ph99222330 *
Public Women's Health Clinic, Royal North Shore Hospital (every Monday AM) Book by phoning Hospital's Clinic 9. GP referral required. 
Prof JR Carter Head Sydney Gyn/Onc Group RPA Hosp
Dr S Pather Gyn/Onc RPA Hosp
Dr GB Gard Lev 5, Douglas Building, Royal North Shore Hosp
Dr FKH Chan Suite 32 1a Ashley Lane Westmead
Dr RJ Hogg Gyn/Onc, Westmead Hosp, Sydney Adventist Hosp
Dr GV Wain Westmead Hosp
Dr AH Brand Dept Gyn/Onc Westmead Hosp Assoc Prof A Proietto 44 Thomas St Cardiff
Dr G Otton PO Box 5 Lambton

Dr Nihad Abu-Asab Armidale Rural Referral Hospital, 226 Rusden St Armidale *

Dr Soak Fung Foong 373 Avoca St Randwick, and once monthly 322 Port Hacking Rd Miranda *

* Specialists added by recommendation of DES daughters.

VIC

DES Clinic, Royal Women's Hospital

Dr Ross Pagano 20 Flemington Rd Parkville
Assoc Prof RM Rome Suite 209 Freemasons Day Centre 320 Victoria Pde East Melb
Dr Neesham Suite C 285 Cardigan St Carlton
Prof MA Quinn 10th Fl Consulting Suites, Frances Perry House, 285 Cardigan St Carlton
Assoc Prof DG Allen -Dept of Gyn/Onc Mercy Hosp for Women, Studley Rd Heidelberg
Dr PT Grant Gyn Cancer Unit Mercy Hosp for Women, 6th Fl, 163 Studley Rd Heidelberg
Dr SE Hyde –Dept Gyn/Onc Mercy Hosp for Women 6th Fl, 163 Studley Rd Heidelberg
Dr TP Manolitsas 315 Wattletree Rd Malvern East
Assoc Prof TW Jobling 134 Bay St Brighton

QLD

Dr James Orford 71 Blackall Terrace Nambour Ph 54415700
Prof AJ Crandon Suite 5, Lev 7 Specialist Centre Brisbane Pvte Hosp
259 Wickham Terrace Brisbane
Assoc Prof Obermair Ned Hanlon Bldg 6th Fl Royal Womens Hospital Herston
Dr JL Nicklin Suite 74 Sandford Jackson Building 30 Chasely St Auchenflower
Dr LC Perrin Mater Medical Centre Suite 7 Lev 6, 293 Vulture St South Brisbane

Dr Marcello Nascimento, Pindara Suites Gold Coast 07 55645110 *

* Specialists added by recommendation of DES daughters

SA

Dr Jane Wood Consultant Obs/Gyn Womens Health Clinic, Flinders Medical Centre,
Flinders Dr, Bedford Park
Dr Enzo Lombardi 68 States Rd Morphett Vale
Dr RJ Miller Calvery Oncology 89 Strangways Terrace North Adelaide

WA

Dr YC Leung Suite 27, SJOG Murdoch Medical Clinic 100 Murdoch Drive Murdoch
Dr AJ McCartney 175 Cambridge St Subiaco Ph 93817000
Dr Steve Harding, Head Dept Gyn, King Edward Memorial Hosp 374 Bagot Rd Subiaco

TAS

Dr PI Blomfield Royal Hobart Hosp Liverpool St Hobart

ACT

Dr David Knight, Deputy Director of O&G, The Canberra Hospital 

INTERESTED GENERAL PRACTITIONERS LIST
GPs are the gatekeepers for our health care and our referrals to DES knowledgeable specialists. It is helpful for DES daughters to have a GP with interest in DES exposure health. DES Action Australia-NSW has an information sheet to assist GPs with the DES examination procedure in the circumstance where DES daughters in isolated areas are unable to access a specialist for DES examinations. Contact DES Action Australia-NSW (02) 98754820 if you require a copy.

General Practitioners as recommended by DES daughters:

QLD 
Warwick: Dr Brian Slattery 53 Wood St Warwick (07) 46669666
Logan Central: Drs Elna & Abel Stolz