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

Posted by beesmom @beesmom, Oct 23, 2024

Recently I read an article about offspring of Mothers who were prescribed D.E.S. while pregnant were more prone to develop autoimmune disorders. Personally, I am a D.E.S. daughter with Anticardiophospholipid Syndrome. Was curious whether there were others in a similar situation.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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esgsf | @esgsf | Aug 31 10:53am
In reply to @becsbuddy "@gucci1 Welcome to Mayo Clinic Connect! You’ve come to the right place with your list of..." + (show)
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@gucci1 Welcome to Mayo Clinic Connect! You’ve come to the right place with your list of AI, cancers, and DES. I can only imagine how difficult it must have been to manage more than 1 situation at a time. I’m sure that we can learn a great amount from each other!
Is there a specific question you have for us now?

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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!

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sondrachristo1 | @sondrachristo1 | Aug 31 6:46pm

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!

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michgirv | @michgirv | Sep 1 11:37am
In reply to @fairn "I am a DES daughter and am so interested to see this thread, I have been..." + (show)
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I am a DES daughter and am so interested to see this thread, I have been suspecting a connection for a long time. I've had a history of medical conditions that none of my 4 siblings have had, including dysplasia of the cervix, endometriosis, loss of an ovary due to a cyst, 3 miscarriages and one live birth. Various other oddities- spontaneous spinal fluid leak, inner ear dysfunction, Dupuytren's, hyperparathyroidism, etc. I have been ANA positive for about 6 years, finally found a rheumatologist that has tested enough to find positive for RA, HLA-b27, early Sjogren's and waiting to determine what the HLA+ might indicate. My daughter had advanced Hashimotos and had her very enlarged thyroid removed which showed microscopic amount of cancer. I am also Rh-, different from my family. I've had high cholesterol for years, despite low body weight. I would love to know if there are any studies or research on this.

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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.

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Colleen Young, Connect Director | @colleenyoung | Sep 1 1:20pm
In reply to @esgsf "Yes-when I was last at Mayo Clinic for my physical I asked if there were any..." + (show)
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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!

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@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/

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