Diethylstilbestrol or DES...anyone?

Sorry Sharon.

My Mom has passed years ago, but do you know what women would have taken it for back then?

Yes and no...
Officially it was sold as a drug to prevent miscarriage, premature birth and an array of other pregnancy related problems but in reality the doctors gave it to pregnant women who complained about anything and everything from swollen ankles to severe morning sickness and bloating!
My mom wasn't at risk for any of the above but was an RN who (back in those days) would have been suspended if they had found out that she was pregnant...so the doc gave her DES to supposedly camoflage the pregnancy, prevent her morning sickness and swelling.
She started taking it at her 2nd month and kept going til practically the end.
When I was born with an array of birth defects no one connected the dots...because she never told anyone (especially not me or my dad) about the drug. Swore on a stack of bible that she had not taken even an asprin...when the findings came out she kept up the lie. Even when I started miscarrying myself, showed all of the birth defects she refused to tell us the truth.
Many, many women hid the truth from their daughter out of guilt, confusion or a dozen other sentiments...it is hard, I guess, to tell your child that you are the cause of their disease and on top of it all, that it was completely unnecessary.
I learned about it from another poucher and her father who explained it all to me.
They can revers-engineer it with certain exams...the particularities of the defects are DES specific.
Spread the word...
ps...how are you doing and how is the family?
Sharon

I was given stilboestrel 40 years ago to gain weight (I don't know if it is the same drug)
though not during pregnancy - this was after a pregnancy and when I had severe weight loss - I did gain a stone in weight

Thank you Sharon. I'm okay, just minor getting older issues, ha ha and my daughter has finally had a blood test with a normal hemoglobin and iron stores! First time in many years. She had the "injectofer" iron infusion in August, so I guess that is what did it. She is still tired all the time though.... but we are thankful for the good results!

Haven't been a regular on here for awhile. I will read your past posts to catch up. Hope you are ok.

Sharon,
Your post is amazing because my mother told me she took DES to prevent miscarriages. I never gave it any thought till now. And then both of us have follicular lymphoma also, interesting, will copy your post to my sister,thanks.

Beckysmom,
So glad to hear the good news...iron levels are not everything...keep her on low carbs and slightly higher protiens and she may find herself full of energy again.
I am experimenting.
Although not stict about any one diet regime, I have severely reduce carbs (bread, cake, pastries, pastas, rice, potatoes except for sweet potatoes) and sugars.
The amazing result was that I had better pouch and gut reactions and my energy level soared.
Little test was this weekend when I did a minor carb binge...Eating a piece of bread or cake every day, twice a day...and I could not wake up, was dragging my butt and could barely climb the hill to the subway.
Was hungry and craving sugars too.
Today I am off of all starches and feel better.
Clouseau,
Yes, please, contact your sister and tell her about this...although I have no idea if there is any effect on the fetus from one pregnancy to the next if she only took it during the 1st pregnancy but that could be a direction to look into too.
I totally forgot about the fact that we both have folicular lymphoma...how are you doing with it?
Is your sister a victim of this too? Has she ever been checked out?
By the way, DES effects BOYs too!
Although the orignal studies only took into account the girls they have now discovered that the boys of DES can have sterility problems as well as other medical issues.
Pass the word...There are thousands of us out there.
Sharon

I'm a DES daughter. My mum took it to prevent miscarrying me. She had three prior miscarriages. And a complicated pregnancy with me. I'm a firm believer that DES has caused many of my medical problems, though there are complete facts as to whether or not it is linked with autoimmune issues. Thing is whether or not you have a DES link.. there really is nothing to be done about it. Just have to be more vigilant on certain yearly exams, etc.

Hi Liz,
Welcome to our very unfortunate club!
My mom (once I had confronted her on it) asked me what it would have changed if I had known...I answered that I would not have spent my life asking myself 'what next?'...it seemed that every single time that I had something moderately under control something new popped up...
Had a dozen and a half surgeries before the k pouch, finally got that in hand and then poof! I miscarry every single time at 4 months (hemi uterus with ruddimentary horn, linning hostile etc), all typical of DES, vaginal cancer (very typical between 20-24)...skeletal deformations (extra and fused ribs, scoliosis), heart murmur, organs deformed, epilepsy (left temporal) and then non-hodgkins lymphoma.
So, for me at least, it meant that if I had known, I could have been prepared or at least watched out for these things or warned my doctors of it.
The lymphoma really sucked (and sucked the energy right out of me)...
My 'what next' is now the talk about a huge increase in the risk of breast cancer especially in those who had vaginal cancer...I am fighting against myself on this one...they offer me free annual mamos and I have not gone in over 2 yrs.
I am not in denial...I am scared silly.
What if's are driving me nuts...if It comes back positive...then what?
Do I have it done or not? Do I do chemo or not? NO...I have decided that I will never again do chemo, have removed etc...
So, although there is nothing that one can do about it there are preventive measures and decisions to be made...a watch list of sorts for the girls...
It is unfair, I know but there you have it...no one knows the extent of all of the side effects of this drug...and yes, for those that took it as an anti-miscarriage med it was worth it...But the studies showed that there was no difference in the percentages of miscarriages with it or without it...worst yet was those who took it for no good reason...or the fact that they knew about the side effects in Europe 20yrs before they pulled it in North America.
Sorry that I am ranting my head off here but DES distroyed my life.
Please stay vigilant, get tested for the various side effects and spread the word.
Sharon