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Has anyone been exposed to diethylstilbestrol (D.E.S) in utero?
Gynecologic Cancers | Last Active: Mar 5 10:03pm | Replies (25)Comment receiving replies
There is an advocacy group, called DES Action, which can provide more information about risks from DES exposure, http://www.desaction.org .
Mayo was one of the institutions that followed women exposed prenatally to DES, through the DES Follow-up Study, with funding from NIH's National Cancer Institute (NCI) for 27 years. Mayo is continuing the study but due to recent NCI budget cuts, will no longer be sending questionnaires to participants; instead, participants will be "passively followed" through state and national cancer registries and other resources. Another agency will be responsible for the passive follow-up activities.
I think this is a loss of important information. The CDC had an information campaign years ago, but it hasn't been updated.
I don't know if the Mayo study or other sites are enrolling new subjects. Kathleen Yost, PhD is listed as the Principal Investigator of the Mayo DES Follow-up Study.
The letter from Mayo reporting this change lists the web site with research to date: https://dceg.cancer.gov/research/what-we-study/des-study
I hope that helps.
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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.