Jeffsmom,
I didn't realise that you were DES too! Wow, finally someone else on this site...
I didn't find out until I was 40 because my mom denied it until then.
I had vaginal cancer at the age of 23. Hit me like a lightening strike. I was recently divorced (!) and had planned my move to Paris after a summer here and boom. Went to see my gyn for a 9month refill script and...She asked me to come in immediately. Communication breakdown. I had had my pap smear in Sept when I had gotten home (was in stage 2) and it was Dec 23 by then. I was already in stage 4. She did the biopsy without anesthetic in her office. I was leaving for Paris the next day. She told me to cancel...I told her that I had intended to live in Paris, now I intended to die there. She gave me my file and I checked into the American hospital in Paris for a work up the following day.
A 9 yr fight, 2 experimental treatments, topical chemo, burning out the lining. 2 tumors in the cul-de-sac of Douglas, an angel of an oncologist in Toronto who followed me the whole time long distance and after a ton of pain, anguish and horrors I won.
Never had kids of my own. Between the Des and the cancer + the k pouch I knew that the odds were against me so I married a divorced man with 2 kids. I am a grandma 4xs now...we learn to make-do.
My last Pap smear was clean. I hold my breath each time.
How does it effect you? They have now learned that it is passed down the generations. Most daughters of Des cannot concieve (hostile uterine formation, the egg can't implant). How did you manage? Did you have any other symptoms or side effects?
I have multiple organ deformations, epilepsy and D'Ehler's-Danlos (heriditary disease of the connective tissue).
My mom took the Des for morning sickness. She tried to hide her pregnancy because she was a nurse and it was against the rules back then. Or at least that is what she told me. Never wanted my dad to know because he made her swear not to take anything.
What our parents do to us!
So can we take HRT or not? How dangerous is it for us? What are the odds of surviving menopause without it?
Thanks for all of the info
Sharon