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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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pattibranigan | @pattibranigan | Oct 23 5:58pm
In reply to @hopeful33250 "Hello @pattibranigan, and welcome to Mayo Clinic Connect. I appreciate you sharing your experience as you..." + (show)
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Hello @pattibranigan, and welcome to Mayo Clinic Connect. I appreciate you sharing your experience as you were exposed to DES in utero. While I've never had breast or gynecological cancers, I have had a rare type of digestive tract cancer as well as hypoparathyroidism, osteoporosis, and other relatively rare disorders.

I am glad to hear that you are active and fit. What type of follow-up exams do you have related to the previous cancer diagnoses? If you have had children, do any of them have health issues that might be related to the DES you were exposed to?

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@hopeful33250

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pattibranigan | @pattibranigan | Oct 23 6:03pm
In reply to @pattibranigan "@hopeful33250" + (show)

@pattibranigan
Thank you so much for writing back to me. I was just diagnosed with osteoporosis. I am not happy but I am starting algaecal in the morning.

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pattibranigan | @pattibranigan | Oct 23 6:12pm

I was exposed in 1955. I have had orecancer cells taken off my cervical at 24 years old. I had preeclampsia at 29, I had breast cancer at 51 and a Dand C at 53. Back issues, and now osteoporosis. All of these are associated with DES. My daughter has had trouble with her periods, epilepsy, pancreatic insufficiency , thyroide issues vaginal issues and scoliosis. DES related? I think so.

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riverland889 | @riverland889 | Oct 26 8:34am

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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kmfdallas | @kmfdallas | Oct 28 10:15am
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 I am sorry to learn of your health journey. Unfortunately, the effects of DES exposure are still continuing to me found. What type of tumor was found in 2023?

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riverland889 | @riverland889 | Oct 28 11:56am
In reply to @kmfdallas "@riverland889 I am sorry to learn of your health journey. Unfortunately, the effects of DES exposure..." + (show)
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@riverland889 I am sorry to learn of your health journey. Unfortunately, the effects of DES exposure are still continuing to me found. What type of tumor was found in 2023?

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@kmfdallas
endometrial cancer but Dr didn’t treat it beyond the hysterectomy she should have now looking back

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