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

What is D.E.S.? Thanks Shirley

My grandmother received DES after a still birth and multiple miscarriages in the 40s and 50s. My Mom was her first successful pregnancy. My Mom does not have any diagnosed AI disorders; however, she does have Factor V Liten. The interesting thing is that I (granddaughter of DES recipient) have multiple AI conditions including - Lupus, Lichen Plano Pilaris, Hidradenitis Suppurativa, etc. My Mom and I have often wondered if DES could be at play in my health journey.

@snugglebugs "Diethylstilbestrol (DES) is a synthetic form of the female hormone estrogen. It was prescribed to pregnant women between 1940 and 1971 to prevent miscarriage, premature labor, and related complications of pregnancy. The use of DES declined after studies in the 1950s showed that it was not effective in preventing these problems, although it continued to be used to stop lactation, for emergency contraception, and to treat menopausal symptoms in women."
https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet

This DES info is very helpful. I am a DES daughter whose mother was given the medication for most of her pregnancy. She died of breast cancer at age 58. I had 5 miscarriages and 1 live birth. I had autoimmune onset at age 62-sjogren’s, rheumatoid arthritis, and one year later primary immunodeficiency.
My daughter, who I now understand is a DES granddaughter, had post viral dysautonomia at age 14 and Sjogren’s and Ehlers Danlos diagnosed at age 29.
All three of us have definitely struggled.
if anyone else becomes aware of information for DES daughters and granddaughters and autoimmune conditions, please share.
This is invaluable. Thank you!

@esgsf I am so sorry for all that you, your mother, and your daughter have been going through and struggling with because of this drug whose effects have been passed down from generation to generation. It saddens and maddens me that we, as patients, take prescribed drugs in good faith, and they end up having such devastating effects on us sometimes. I am glad that it is no longer being prescribed and pray that you and all other ladies who have been negatively affected by it will be able find some relief from its various effects. From what I am reading in these posts on Connect, the drug didn't even do what it was prescribed for. Are there any doctors that specialize in treating D.E.S. daughters and granddaughters?

Thank you for your empathy and understanding. It has been heartbreaking that a prescribed drug could have such a devastating family impact. Many of the Drs who treated me that had DES experience have retired so I am grateful for an ongoing info or studies for my daughter’s care. Thank you!

@esgsf You're welcome. You and your daughter are in my thoughts and prayers, and I hold out hope for answers and some measure of resolution...or better yet, total resolution, for both of you. ❤️

I also am a DES Granddaughter with multiple autoimmune disorders as well multiple cancers. My AI ranges from PsA, AS, RD, RA, HD. I carry an MSH2 gene mutation that causes Lynch Syndrome and multiple cancers...so far, ive had metastatic uterine cancer, metastatic breast cancer, papillary thyroid cancer, squamous cell colon cancer, and currently Barretts Esophagus. My Mom, a DES Daughter also has AS, RA, RD and has had 7 types of cancer, now currently battling Stage 4 Kidney Disease.

@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?

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.