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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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suzanne48864 | @suzanne48864 | Jun 17 7:59am
In reply to @riverland889 "I am a DES daughter born 1952; my mother had a miscarriage before me and with..." + (show)
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I am a DES daughter born 1952; my mother had a miscarriage before me and with me almost had a miscarriage so she took DES; but still had to lay in bed for 6 months to avoid miscarrying. At around 17-18 years old, I recall my mother taking me to her gynecologist because she heard about DES babies but I was fine, then. In 2013, I had stage 0 breast cancer, now it's not even diagnosed as BC, but I did have radiation; in 2020 I was bleeding, so had total hysterectomy, a tumor was found but I received no further treatment; then it recurred in 2023 and have been treated for it ever since, now in immunotherapy with success. If I learned I was DES I would DEFINITELY get screened for cancer.

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@riverland889 It’s so interesting how similar many of our journeys have been. I, too, had irregular periods in my teens, had preeclampsia with my pregnancies, was diagnosed with stage 1A adenocarcinoma ( endometrial cancer) with a complete hysterectomy only to have a clear cell cancer stage 1 in my vagina a year later. Radiation and brachytherapy. 5+ years cancer free now. But I have radiation proctitis from radiation.

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suzanne48864 | @suzanne48864 | Jun 17 8:01am
In reply to @ffr "@kmfdallas Thank you for sharing this. My mother told me that she took DES while pregnant..." + (show)
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@kmfdallas
Thank you for sharing this. My mother told me that she took DES while pregnant with my older sibling but not for me, so I had no concerns. In 2022 I was diagnosed with clear cell endometrial cancer and I have recently learned that clear cell is often the type of cancer that DES daughters get. I had some other gyn issues prior to this, as have my two daughters. So I ponder if my mom misremembered or if there’s reason for children of subsequent pregnancies - as well as subsequent generations - to be at risk.
And then there’s the male children of DES moms…..
I will look into the U of Chicago study.
Best wishes to all of us on the anxiety-laden cancer journey.

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@ffr It’s been my understanding that once a mother takes DES, all future children can be affected.

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ffr | @ffr | Jun 17 10:05am
In reply to @suzanne48864 "@ffr It’s been my understanding that once a mother takes DES, all future children can be..." + (show)
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@ffr It’s been my understanding that once a mother takes DES, all future children can be affected.

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@suzanne48864
Wow! That’s the first I’ve heard of this. But yet it does make sense, especially considering my history. Thank you for putting this out there.

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suzanne48864 | @suzanne48864 | Jun 17 3:10pm
In reply to @ffr "@suzanne48864 Wow! That’s the first I’ve heard of this. But yet it does make sense, especially..." + (show)
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@suzanne48864
Wow! That’s the first I’ve heard of this. But yet it does make sense, especially considering my history. Thank you for putting this out there.

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@ffr After writing that comment I double checked on the internet. It appears there is NO definitive risk for grandchildren of DES users. Sorry for the misinformation. I’ll research before posting in the future.

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jayanthk | @jayanthk | Jun 17 3:44pm

I was exposed to DES in utero, and I've experienced several health complications that have been linked to that exposure. Given your history of cervical and vaginal cancer, you're certainly not alone, and it's important to continue working closely with your oncology team for monitoring and treatment.

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ffr | @ffr | Jun 17 6:11pm
In reply to @suzanne48864 "@ffr After writing that comment I double checked on the internet. It appears there is NO..." + (show)
Profile picture for suzanne48864 @suzanne48864

@ffr After writing that comment I double checked on the internet. It appears there is NO definitive risk for grandchildren of DES users. Sorry for the misinformation. I’ll research before posting in the future.

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@suzanne48864
I read that that there have been some studies about grandchildren of DES women. There have been some trends noted from male genital issues at birth to ADHD, but the studies have been very small so not definitive. I thought you meant that the younger sibling of the baby who was in utero when the mom took DES might have medical issues (possibly due to any residual medication in the mom’s body or changes in her body chemistry or DNA). But I haven’t found anything that supports that.

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kmfdallas | @kmfdallas | Jun 18 12:30pm
In reply to @suzanne48864 "@ffr After writing that comment I double checked on the internet. It appears there is NO..." + (show)
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@ffr After writing that comment I double checked on the internet. It appears there is NO definitive risk for grandchildren of DES users. Sorry for the misinformation. I’ll research before posting in the future.

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@suzanne48864 True, from the studies but if you review the 2 editions of Voices of the DES-Exposed Speaking out published by DES Info Association, linkages can be seen. Email DES411@gmail.com if you wish to review these documents.
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