Has anyone been exposed to diethylstilbestrol (D.E.S) in utero?

Posted by marys1956 @marys1956, Aug 31, 2022

Has anyone here been exposed to DES while in-utero? My mom was prescribed it in the 1950’s. I’ve had a hysterectomy, cervical cancer, vaginal cancer (now returned).

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@sepdvm I was born in 1952 and I learned as an adult that my mother miscarried between my birth and my brother who was born in 1955. I wondered if my mother was prescribed DES but I never asked. When I was in my 20's and 30's and had annual Pap smears none of these were abnormal. I remember when I was in my late 20's finding out that one of my colleagues who was about the same age as me learned she was a DES daughter and how frightened she was at the time. Could she have children? Would she develop cancer? I've lost track of her over the years and wondered occasionally what happened.

Your experiences as a veterinarian (is there any peer-viewed published evidence?) that DES does not affect canines in the same way it affected humans is rather telling, isn't it? And that the amount you prescribed for canines was very small in comparison to what pregnant women were prescribed back in the day with no signs of cancer or bone marrow problems in these dogs related to the intermittent DES treatments.

Bravo that you now have these three beautiful children. It must be wearing and exhausting to go through all the surveillance and treatments for metastatic Squamous Cell Carcinoma for 12 years.

Thank you for sharing your story, Sue.

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@naturegirnaturegirl5 and @sepdvm
This renewed interest in DES is interesting. My mom had DES treatments when she was pregnant with me (she had two miscarriages prior). I've given birth once, and there were no problems with the pregnancy or delivery. For that, I'm grateful.

While I've not had any gynecological cancers, I've had the NETs which is a rare form of cancer. I've often wondered how DES might have affected my long-term health.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@sepdvm I was born in 1952 and I learned as an adult that my mother miscarried between my birth and my brother who was born in 1955. I wondered if my mother was prescribed DES but I never asked. When I was in my 20's and 30's and had annual Pap smears none of these were abnormal. I remember when I was in my late 20's finding out that one of my colleagues who was about the same age as me learned she was a DES daughter and how frightened she was at the time. Could she have children? Would she develop cancer? I've lost track of her over the years and wondered occasionally what happened.

Your experiences as a veterinarian (is there any peer-viewed published evidence?) that DES does not affect canines in the same way it affected humans is rather telling, isn't it? And that the amount you prescribed for canines was very small in comparison to what pregnant women were prescribed back in the day with no signs of cancer or bone marrow problems in these dogs related to the intermittent DES treatments.

Bravo that you now have these three beautiful children. It must be wearing and exhausting to go through all the surveillance and treatments for metastatic Squamous Cell Carcinoma for 12 years.

Thank you for sharing your story, Sue.

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I might add that my daughter age 40 has two healthy children and had none of my problems during gestation. As to DES in dogs, there is plenty of documentation of bone marrow dysplasia with the use of DES for incontinence. at higher doses. Again, the recommended doses vs the effective doses can be vastly different and if a patient does not respond to a small dose, it is not safe to increase it without anticipating side effects. Since it is used in spayed dogs for this leakage problem there is little reproductive tract left to be concerned about for cancer formation, but as to other types.......?

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Profile picture for livedinrochester @livedinrochester

Wow. I am glad I just joined this. I did not really think anyone would respond. Thanks beesmom. Nice to know that I am not alone. I was always "blue" as a kid and later in life felt depression and anxiety too along with my Mom. I finally started ( I did not want something messing with my brain!) on Lexapro but just gained weight. Then Bupropion but could not handle the extreme dry mouth at night. Stopped that too and no dry mouth anymore. On nothing now but I probably should try something again. Do Zoloft and Trazadone work for you?

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Yes, the Zoloft & Trazadone have worked. It’s not perfect. Still have the underlying anxiety that never lets me completely relax, but this combination has helped more than others. Wishing you the best!!!

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I am a DES Daughter now in my 70s with many DES related health issues.

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Profile picture for Sue, Volunteer Mentor @sepdvm

I might add that my daughter age 40 has two healthy children and had none of my problems during gestation. As to DES in dogs, there is plenty of documentation of bone marrow dysplasia with the use of DES for incontinence. at higher doses. Again, the recommended doses vs the effective doses can be vastly different and if a patient does not respond to a small dose, it is not safe to increase it without anticipating side effects. Since it is used in spayed dogs for this leakage problem there is little reproductive tract left to be concerned about for cancer formation, but as to other types.......?

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Being a DES Daughter, I refused to give my dog DES. A known carcinogen.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

@naturegirnaturegirl5 and @sepdvm
This renewed interest in DES is interesting. My mom had DES treatments when she was pregnant with me (she had two miscarriages prior). I've given birth once, and there were no problems with the pregnancy or delivery. For that, I'm grateful.

While I've not had any gynecological cancers, I've had the NETs which is a rare form of cancer. I've often wondered how DES might have affected my long-term health.

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I am a DES Daughter and DES Advocate. There have been found many other long-term effects and 3rd generation effects.

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Profile picture for kmfdallas @kmfdallas

I am a DES Daughter and DES Advocate. There have been found many other long-term effects and 3rd generation effects.

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Is there a listing of the third-generation effects?

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Is there a listing of the third-generation effects?

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Yes, from the NIH and DES Info Association

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Profile picture for kmfdallas @kmfdallas

Yes, from the NIH and DES Info Association

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@kmfdallas, you will be able to post links in a few days. Allow me to post the NIH link I think you're referring to

- Diethylstilbestrol (DES) Exposure and Cancer https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet

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Profile picture for Colleen Young, Connect Director @colleenyoung

@kmfdallas, you will be able to post links in a few days. Allow me to post the NIH link I think you're referring to

- Diethylstilbestrol (DES) Exposure and Cancer https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet

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That is, it. Also, DES Info Association has published a pamphlet "Caring for the Diethylstilbestrol Exposed Patient". This pamphlet includes research articles and the various needs of the DES exposed. Designed as a resource for the DES exposed and to give to physicians caring for the DES Exposed. Are you interested in this?

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