DES EXAMINATION EXPLAINED

The organisation, DES Action Australia-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.
More information is at www.desaction.org/paptest.htm

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 Australia-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).