I am going to share excepts from a dear friends email, to help explain this DES..a homonial steriod that affects the child of the mother taking it, it affect the dughters one way, and now they are seeing it affect the male children, too.
I also took it, as did my real mother. :(
"..... I am a DES daughter. My mother took diethylstilbestrol when she was pregnant with me. It is a synthetic steroidal hormone that causes problems with fetal development. I had always known that some DES daughters developed a particularly bad kind of vaginal cancer (usually by the time they are 21) and I thought I was over that high risk time. However, I just read a couple of books and it seems that DES was the worst drug ever given to pregnant women with regard to defects. Chances are all of my gynecological and endocrine problems were due to the drug and now studies in mice have shown bad damage to the immune system as well. (All the mouse studies have absolutely mirrored human findings, but they haven't done any real studies on DES/immune system/humans yet.) Anyway, I have had weird immune things all my life and now it seems like DES might be the reason -- and the reason why I may have bigger immune system problems now. I am going to try to get to the root of them and see if I can get accurate diagnoses. I know stress makes them much worse....."
I want to add, this sounds like me, too!
more excerpt
".....Two books you and your daughter MUST get and read:
"Our Stolen Future," by Theo Colburn, Dianne Dumanoski, and John Peterson Myers. (1996) - Mostly about animal studies, in the lab and in the wild, but about 25% having to do with DES. This is the book that got me going on current info. I think you can order from their web site, if not on-line or regular bookstores.
www.ourstolenfuture.org/
"The Greatest Experiment Ever Performed on Women," by Barbara Seaman (2003) - Just out and mostly about hormone replacement therapy and DES. Powerful book. I ordered it from a local book store and they shipped it to me within a couple days. It is well worth the money. If you have been on HRT you MUST read this book. (She has nothing good to say about the drug industry.)
Should be available in on-line or regular bookstores now.
I also joined DES Action
www.desaction.org/
and an e-mail listserv for DES sisters. Our DES "brothers" have also had problems. I really dug into all of this in a heavy way a few weeks ago. You register at this site and they will send you the passwords to join the listserv. Just hop on and introduce yourself. I was STUNNED by the number of women who have had serious, serious problems with pregnancies, cancers, immune disorders, etc. Sometimes it is overwhelming, but I have learned a lot. I had no idea about the T-shaped uteruses which prevent carrying a baby to term. It also appears that DES daughters are having a whole second-round of problems as they become post-menopausal. Also, there may be problems carried into the *third* generation. It is very important to see a doctor who takes DES seriously. So many of them just brush it off.
www.surrogacy.com/online_support/des/
Let me know if I can get you any more information. DES Action has been publishing newsletters for *decades* and I never knew. They will send you a free info packet if you call. Membership is $35-$40/year for a basic plan. That gets you the newsletters. I haven't had time to open my membership package yet and pore through it to see what else is in there. Also, lawsuits are being settled out of court (for pregnancy problems and cancer only, so far). You can print a form to join off the website. No credit cards. You have to mail a check. But they got back to me in a week or so...."
this is really making me go...Hhhhmmmmmm?
I also took it, as did my real mother. :(
"..... I am a DES daughter. My mother took diethylstilbestrol when she was pregnant with me. It is a synthetic steroidal hormone that causes problems with fetal development. I had always known that some DES daughters developed a particularly bad kind of vaginal cancer (usually by the time they are 21) and I thought I was over that high risk time. However, I just read a couple of books and it seems that DES was the worst drug ever given to pregnant women with regard to defects. Chances are all of my gynecological and endocrine problems were due to the drug and now studies in mice have shown bad damage to the immune system as well. (All the mouse studies have absolutely mirrored human findings, but they haven't done any real studies on DES/immune system/humans yet.) Anyway, I have had weird immune things all my life and now it seems like DES might be the reason -- and the reason why I may have bigger immune system problems now. I am going to try to get to the root of them and see if I can get accurate diagnoses. I know stress makes them much worse....."
I want to add, this sounds like me, too!
more excerpt
".....Two books you and your daughter MUST get and read:
"Our Stolen Future," by Theo Colburn, Dianne Dumanoski, and John Peterson Myers. (1996) - Mostly about animal studies, in the lab and in the wild, but about 25% having to do with DES. This is the book that got me going on current info. I think you can order from their web site, if not on-line or regular bookstores.
www.ourstolenfuture.org/
"The Greatest Experiment Ever Performed on Women," by Barbara Seaman (2003) - Just out and mostly about hormone replacement therapy and DES. Powerful book. I ordered it from a local book store and they shipped it to me within a couple days. It is well worth the money. If you have been on HRT you MUST read this book. (She has nothing good to say about the drug industry.)
Should be available in on-line or regular bookstores now.
I also joined DES Action
www.desaction.org/
and an e-mail listserv for DES sisters. Our DES "brothers" have also had problems. I really dug into all of this in a heavy way a few weeks ago. You register at this site and they will send you the passwords to join the listserv. Just hop on and introduce yourself. I was STUNNED by the number of women who have had serious, serious problems with pregnancies, cancers, immune disorders, etc. Sometimes it is overwhelming, but I have learned a lot. I had no idea about the T-shaped uteruses which prevent carrying a baby to term. It also appears that DES daughters are having a whole second-round of problems as they become post-menopausal. Also, there may be problems carried into the *third* generation. It is very important to see a doctor who takes DES seriously. So many of them just brush it off.
www.surrogacy.com/online_support/des/
Let me know if I can get you any more information. DES Action has been publishing newsletters for *decades* and I never knew. They will send you a free info packet if you call. Membership is $35-$40/year for a basic plan. That gets you the newsletters. I haven't had time to open my membership package yet and pore through it to see what else is in there. Also, lawsuits are being settled out of court (for pregnancy problems and cancer only, so far). You can print a form to join off the website. No credit cards. You have to mail a check. But they got back to me in a week or so...."
this is really making me go...Hhhhmmmmmm?


