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

@hopeful33250

@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.

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.

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.

@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?

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

In 2019, I had a complete hysterectomy when I was diagnosed with stage 1A adenocarcinoma. Because of the low grade, there was no chemo/radiation prescribed as follow up. In late 2020, during a check up, a lesion was discovered in my vagina. It was found to be a state 1 clear cell cancer. I was unable to find whether my mother took DES during her pregnancy with me. (I was born in 1952). I had 30 treatments of radiation therapy followed by 3 brachytherapy sessions. I have been cancer free for 5 years though I have ongoing radiation proctitis from the treatments. Because so little is known about the longevity of DES exposed daughters who contracted vaginal cancer and because it was a clear cell cancer - so not a spread of my previous cancer, but a new cancer - I continue to live with a cloud over my head. It’s interesting how close my story is to others. I would love to have ongoing discussions with others with similar diagnoses. Thanks!

@suzanne48864 Info from a DES Daughter about the DES Registry
https://voices.uchicago.edu/ccaregistry/contact/
"I am a DES daughter who had a CCA of the uterus when I was 60. I am now 72. I have just signed consent forms to participate in a research study with the University of Chicago and would like to encourage anyone in our DES community who has been diagnosed with any gynecological CCA to contact them and see if you are eligible to participate. You do not have to live in the Chicago area. There are no financial costs to you. I will be providing blood work and access to other related medical info. That is all. I have provided their contact info in a link. University of Chicago is the only place I could find that is doing this kind of research. Please join me and let's make something good happen from our exposure to DES and subsequent cancer"

You can also join the Facebook Page DES Tragedy DES Exposed Welcome which is a private page and DES Daughters do share on this page.

@kmfdallas Thank you so much for reaching out. It is so nice to hear you are doing so well. Even though intellectually I know I should relax at 5 years, I am still quite anxious. My doctor has me dilating ever 4-5 days to make it easier to do a visual examination at my once a year check up. This means “cancer” is never out of my mind. Every little symptom seems like it could be a “sign”. I’ll get in touch with University of Chicago. I live right across the lake in Michigan.

@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.