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

@cjdavison, I invite you to join these discussion groups here to connect with other living with stage 4 advanced cancer:
- Anyone living with metastatic endometrial Cancer? What treatments? https://connect.mayoclinic.org/discussion/anyone-living-with-metastatic-endometrial-cancer/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Hi! I’m a DES daughter also. My mother was prescribed the drug while pregnant with me in 1957. As a result I was diagnosed with an everted cervix in my teens and for many years had abnormal Pap smears and fertility issues. In 1990, I was informed that I had APS (Antiphospholipid Syndrome) an autoimmune disorder. No doctor has been able to tell me how I got this condition. I was wondering whether anyone else has APS and could it be connected to DES drug.

Btw, DES is back on the market and being prescribed to control incontinence in dogs.

Hi, I"m the executive director of DES Action, USA. I'm also a DES daughter (exposed to DES in utero). 5-10 million pregnant women were prescribed DES in the 1940s, 50s 60s and early 1970s. I'm so sorry for your health troubles, you are not alone.
Because the US gov no longer updates it's site, our webpage is the most complete information on DES available.
If you had vaginal cancer and were exposed to DES you likely had CCA, a very rare cancer connected to DES exposure.
Please report your cancer to the Clear Cell Adenocarcinoma Registry. The link is on the home page of DES Action. CCA was found in young women who'd been exposed in utero (like you). We are very interested in hearing about recurrence. If you'd like to talk offline, please do reach out to me though the DES Action website (I"m not allowed to post urls on this comment board, which is a good policy)

Thank you for posting info about your D.E.S. Site. I will definitely look into it.
Have you heard of others who discovered they too had an autoimmune disorder like myself? I’m trying to figure out how I may have gotten my rare APS. Thank you again!

I was born in 1950 and I am a DES daughter. I had my first gynecological exam at the age of 20 and the physician noticed what he thought was a fibroid tumor at the opening of my cervix and scheduled me for a D&C. He discovered during the procedure that it wasn’t a fibroid tumor but that my uterus was significantly deformed to the point that would not support a pregnancy and he removed my uterus and cervix. He also said it had some of the characteristics of DES. After contacting my mother’s obstetrician, my parents learned that my mother was indeed given DES while pregnant with me because of a prior miscarriage. So far, I have not had a diagnosis of cancer and my 2 most recent physicians have said I no longer need to get Pap smears. I can’t help but wonder if I should. Any recommendations?

You have to be kidding!!! Now I will know to make sure my dogs don't get DES prescribed.
My Mom took it in 1951 with me and my brother.

My Mom also took DES from Mayo with me in 1951. Around 1974/1975 my Mom got a letter asking about me and I went to Mayo for a "stain" of some kind with doctors looking inside my vagina. Nothing came of it. Pap test, pelvic exams every year after (not at Mayo) and all ok. Never wanted kids so I have no experience with fertility as a DES daughter.
Now at 72, I have depression that I now see could be from DES. In looking at articles about DES daughters, I am seeing other possible things that could happen: pancreatic cancer, (!) breast cancer. Oh, and I have had HOT FLASHES for 22 YEARS! Used BHRT and that worked but I got nervous of the Estradiol for all these years and went off. HOT FLASES back. Could this be because of DES? Cannot seem to see anything about that.

Your symptoms are similar to mine. I’m 66 y/o and have been having hot flashes for at least 15 years now, longer than typical menopause. I have always suffered from depression and anxiety which runs in my family. Now, I wonder whether it is exacerbated by my DES connection. Anyone on good meds they would recommend. I have been on Zoloft and Trazadone for years.

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?