D.E.S. Daughter with an Autoimmune Disorder! Anyone else???

Yes-when I was last at Mayo Clinic for my physical I asked if there were any Mayo physicians or practice groups focused on DES granddaughters and treating them for infertility and pregnancy? That was in March and I haven’t heard back. Can you let us know any resources across Mayo? We are seen in Rochester, MN and live in CA. Thank you!

Hello, so glad I happened upon this post.
I am a DES daughter.
So far I’m dealing with or have dealt with cervical dysplasia, miscarriages, Epstein Barr, Hashimotos, lichen Plano pilarus, and sjogrens

A few years back I was given a drug, prolia, to treat osteoporosis. It set off a firestorm of autoimmune symptoms. I am still dealing with the aftermath. I didn’t learn til after I took the drug that it is contraindicated for anyone with autoimmune issues.
We need to guard our health even more with this in our history. I make sure to tell every doctor I meet with. It’s important this is in our records, no matter how old we get!
I wish everyone the best, I know the journey is hard, we must keep moving forward!

I don't know about any studies but I'm also a DES daughter with multiple autoimmune diseases. Rheumatoid Arthritis at 9 yo. From there Sjogren's, Grave's with removal of thyroid, endometriosis with total hysterectomy, Systemic Vasculitis (Polyarteritis nodosa) Autonomic and peripheral neuropathy (autoimmune). The autonomic has caused gastroparesis and severe orthostatic hypotension. Both daughters have autoimmune diseases but my son is fine. All of these problems sound crazy but with the help of a caring family practice doctor all the dots connected when I was in crisis and didn't realize it. He explained it like a bunch of satellite issues revolving around the real problem. My rheumatologist said it never should have happened because I had the history of rheumatoid as a child. I'm now 66 and life is a daily struggle and I'm tired. I am on Cellcept and monthly IVIG treatments. If you find any good research articles please post them. I'll do the same.

@esgsf, the clinical team providing care regarding diethylstilbestrol (DES) exposure is Obstetrics and Gynecology at Mayo Clinic. You may be interested in this article for more information:
- Mayo Clinic Q and A: Women Should Talk to Doctor About Possible Health Risks if Exposed to DES in Utero https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-talk-to-doctor-about-possible-health-risks-if-exposed-to-des-in-utero/

I am a 71 year old DES daughter. I was in a study at UCI when I was younger. In those days hormones were thought to aggravate the bad effects of the DES treatment, even with a distance of years between the initial treatment, as it itself was an overload of estrogen. I never took birth control pills. I watched estrogen levels. And went through menopause without HRT (ugh).
Last year I was diagnosed with polymyalgia rheumatica. Maybe a coincidence. I understand that nothing is normal in trends with PMR, so hard to say.

My wife was a DES daughter and she had a host of health issues that were almost certainly autoimmune in nature. Unfortunately she was simply told it was CFS and she never received any formal diagnoses.

Sorry I can’t be of more help other than to say that I have no doubt that DES exposure makes autoimmune disorders much more likely.

@colleenyoung
Thanks so much for this info. My daughter is now expecting an in her fourth month of pregnancy. She is a DES granddaughter. I was exposed in utero for over six months and we have flagged for her doctor that she’s a DES granddaughter. We both onset multiple auto immune diseases, including Sjogren’s. I also have rheumatoid arthritis and selective primary immunodeficiency(IgM) and she has hyper mobile Ehlers Danlos. We don’t know if it’s all related, but have been sharing all of our health info with the specialists and doctors that treat multigenerational complex cases.
If we can be helpful to any other family, we’re happy to do so.
I had six pregnancies, one live birth, and my mother died of breast cancer that they think was related to the DES when she was only 58 years old.
Partnering together and using great science, we’ve gotten a lot of help. But there are a few doctors that recall the DES impact and it’s so important to make it top of mind in every treatment.

@tyl411 when were you in the UCI study? My mother was a des daughter and participated in a UCI study in 1982. Just wondering if it was the same one.

I am a des granddaughter and have multiple autoimmune diseases: Lupus, Sjogrens, Rheumatoid arthritis, Hypothyroidism, and Gout. It only occurred to me recently that maybe these are related.

@idioskosmos
I was in the study around 1974. I didn't initially know I was in a study, if you can believe that. My Mother had steered me towards UCI when she had learned of the study, and I just thought it was a checkup for DES daughters. It was a bit awkward for a young person in that many Doctors were learning in one room on one patient. On the up side, I learned so much and was steered towards Doctors afterwards that were experienced in colposcopy procedures. I had to have biopsies as I had what was called the Rooster Comb, and surrounding dysplasia. Present day knowledge does not seem to show that estrogen is a problem. I am old school though, and just feel less nervous without it.