Medical Survey on Effects of Stilboestrol (DES) in Children (DES Daughters and Sons) and Grandchildren
Diethylstilbestrol (DES) is a synthetic estrogen that was prescribed to pregnant women (DES mothers) from the 1940s to the early 1970s to prevent miscarriage and also as a lactation suppressant in mothers who were forced to give up their babies for adoption. This survey has been put together by Origins SPSA t/a Origins Australia to ascertain what, if any, long-term medical and health problems have arisen in the children of these mothers (DES daughters and sons) who were exposed to DES in utero. The results of the survey will be collated and presented to the government, research organisations, and the media so that the medical profession becomes publicly aware of repercussions to both the mothers and their subsequent children and grandchildren. It will then be presented to future government inquiries as further evidence of the harm caused by this medication generally, as the administration of this medication in the context of forced adoption practices. All information to us will be handled with the strictest confidence and end-to-end encryption is used to secure your data. Your information will be used in accordance with our Privacy Policy, which you can find on our website at www.originsnsw.com
SECTION A: Contact Information
Please enter your full name.
*
First Name
Last Name
Please provide your email address.
*
example@example.com
Your contact phone number (optional).
Please enter a valid phone number.
Your mailing address (optional).
Street Address
Street Address Line 2
City
State / Province
Postal / Zip Code
Please Select
Afghanistan
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antigua and Barbuda
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Moldova
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Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar
Nagorno-Karabakh
Namibia
Nauru
Nepal
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
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Turkish Republic of Northern Cyprus
Northern Mariana
Norway
Oman
Pakistan
Palau
Palestine
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn Islands
Poland
Portugal
Puerto Rico
Qatar
Republic of the Congo
Romania
Russia
Rwanda
Saint Barthelemy
Saint Helena
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Samoa
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Saudi Arabia
Senegal
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Seychelles
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Somalia
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South Africa
South Ossetia
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eSwatini
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Syria
Taiwan
Tajikistan
Tanzania
Thailand
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Vanuatu
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British Virgin Islands
Isle of Man
US Virgin Islands
Wallis and Futuna
Western Sahara
Yemen
Zambia
Zimbabwe
Other
Country
Date of birth.
*
-
Month
-
Day
Year
Date
Do you identify as a (select all that apply):
*
DES Daughter - Please complete this section and SECTION B
DES Granddaughter - Please complete this section and SECTION B
DES Son - Please complete this section and SECTION C
DES Grandson - Please complete this section and SECTION C
Parent or Legal Guardian of a DES Grandchild under 18 years of age - Please complete this section and either SECTION B or SECTION C where applicable
If you are the parent or Legal Guardian of a DES Grandchild, please indicate the grandchild's date of birth:
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Month
-
Day
Year
Date
If you are a DES Son or Daughter, are you an adoptee?
*
Yes
No
Unsure
If you are a DES Grandchild, was your mother or father an adoptee?
*
Yes
No
Unsure
If you are a DES Daughter or Son, please indicate how you came to discover that your mother was exposed to stilbesterol (DES) while you were in utero
Positive confirmation by your mother
Medical records
Medical tests/diagnoses indicative of DES eexposure (e.g. discovery of T-shaped uterus, low sperm count etc)
Other
If you are a DES grandchild, please indicate how you became aware of your status
Confirmation from father that he is a DES Son
Confirmation from your mother that she is a DES daughter
Medical records
Medical tests/diagnoses indicating that you or your parents had been exposed to DES
Other
If you have further information about how you came to know about your status as a DES Son or daughter or grandchild, please provide detail this below
Have you ever had, or been advised to undergo Assisted Reproductive Treatment (ART), including:
YES
NO
IVF
IUI - assisted insemination
Using Donor Eggs
Using Donor Sperm
Other
Have you ever had, or been diagnosed with, the following mental health conditions:
Yes
No
Depression
Anxiety
Other
If you selected "Yes" above, please specify the mental health condition you were diagnosed with, as well as when you were diagnosed and any medications that were prescribed (if applicable)
Do you consent to be contacted at a future date by Origins and any research partners it engages to provide further information regarding your responses to this survey? Further participation will enable Origins to conduct further research regarding the long-term effects from the administration of Stilboestrol to DES mothers, and the effects on their children and grandchildren.
Yes
No
SECTION B - DES Daughters and Granddaughters
Parents/Legal guardians can complete the following questions on behalf of a minor DES granddaughter
If applicable, at what age did you start menstruation?
Have your periods always been:
Regular
Irregular
Are you taking the birth control pill?
YES
NO
If you have reached menopause, at what age did this happen?
Are you taking HRT?
YES
NO
If you are undergoing medical treatment or medication to control menopause symptoms please specify below the treatment type, medication(s) and dosage, as well as when you began these these treatments and/or medications
Have you ever been diagnosed as having structural abnormalities of the reproductive system, including:
YES
NO
UNSURE
Altered shape of the uterus
Altered shape of the cervix
Changes to the cells in the cervix/vagina, including cervical intraepithelial neoplasia (CIN)
Other
If you selected "other" above, please provide more information below:
Have you ever had a mammogram which indicated any of the following:
YES
NO
Calcification of Breast Tissue
Fibrous tissue
Breast Nodules
Pre cancerous cells
Non cancerous cells
Cancerous cells
Have you ever had, or been diagnosed with:
YES
NO
Clear cell cancer (adenocarcinoma, or CCA)
Vaginal or uterine cancer (other than CCA above)
Cancerous or pre cancerous cervical cancer
Cervical polyps
Breast cancer
Cancerous or precancerous ovarian cancer
Malignant cancer (any)
Malignant tumor (any)
Abnormal pap smear tests or biopsies
Yellow or green discharge during menstruation or at any other time
Bleeding from the nipples, with or without a cancerous diagnosis
A cone biopsy
A Hysterectomy
Other Uterine issues such as fibroids, prolapse etc.
Endometriosis
Adenomyosis
PCOS
Radiation treatment
Chemotherapy
Auto-immune disease
Bladder infections
Kidney Stones
High Cholesterol
High Blood Pressure
Heart Disease
If you answered 'Yes' to any of the above conditions, or you experienced similar conditions not specified above, please detail your condition below, including when you were diagnosed and medications/treatments you received
Have you ever had, or been diagnosed with, the following fertility or reproductive health issues:
YES
NO
Problems getting pregnant
Failed IUD devices
Cervical incompetence
Miscarriage
Stillbirth
Ectopic (tubal) pregnany
Premature labour/delivery
Delivery problems
Other
If you answered 'Yes' to any of the fertility issues or reproductive conditions, or you experienced similar conditions not specified above, please detail your condition below, including when you were diagnosed and medications/treatments you received
As a DES daughter or granddaughter, please share any additional comments or information relevant to your medical history and medication experiences
SECTION C - DES Sons and Grandsons
Parents/Legal guardians can complete the following questions on behalf of a minor DES grandson
Have you ever been diagnosed as having structural abnormalities or problems of the reproductive system, including:
YES
NO
Undescended testicles
Under-deveoped testicles
Lowered sperm count
Testicular cysts
Testicular Inflammation
Testicular infections
Other
If you selected "other" above, please provide more information below
Have you ever had, or been diagnosed with:
YES
NO
High Cholesterol
High Blood Pressure
Heart Disease
Breast cancer
Prostate cancer
Malignant cancer (any)
Malignant tumor (any)
Radiation treatment
Chemotherapy
Auto-immune disease
Bladder infections
Kidney stones
If you answered 'Yes' to any of the above conditions, or you experienced similar conditions not specified above, please detail your condition below, including when you were diagnosed and medications/treatments you received
As a DES son or grandson, please share any additional comments or information relevant to your medical history and medication experiences
Submit Survey
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