New Information-DES Daughter

Question

I posted earlier but will recap shortly.  I have two ovarian cysts - left ovary - 1 = 1.4 cm & other = 1.9 cm -- this was at ultrasound 1 month ago -- have been in significant pain for about 6 weeks now and finally started my menstrual cycle by progersterone prescription after no cycle for 2 months.  OB is sending me to GI doctor next week to rule out GI problems.... My question is:  I just found out last night that I am a DES daughter.  For those of you that don't know what this is -- apparently my mother was giving the DES drug during her first 4 months of being pregnant with me to stop miscarriage.  This was taken off the market right after my birth.  Does anyone have any experience with this and should I be concerned with my recent pains etc.  I do have a "T" shaped Uterus and had 3 miscarriages and preterm labor with my son (which are all symptoms of the DES as well - I've discovered online today). Thanks for any info you might have

SimplyStar · Answer

My daughter was a DES baby as I was given it to prevent me losing another baby, I had already lost 4, but that was blamed on my polio. when Leslee was dx with OVCA, Mayo did some kind of blood test and it was confirmed that her cancer was not caused by the DES.  She had a completly normal , very active, intelligent life span so far with the exception of the OVCA. She had the BRAC testing and was confirned negative.  We are still researching the possibility of her OVCA being caused by her fathers exposure to radio activity from being in an Atomic test in 1946. The incidence of all cancers is very high in these men and their children.  The government held all this information secret for 50 years,  I am working with a group that is trying to get data compiled to present to the VA. The cancer rate that we see so far runs about in the 60% bracket.  Higher for the actual participants.

jotabravo · Answer

From what I understand, DES can also cause autoimmune problems resulting in spine degeneration and joint problems.  Has anyone heard of this?  Any idea where I can get more information on this specific problem?

C1964 · Answer

I am a DES daughter and regarding research and statistics there is not much to go on.  They are still finding stuff out.  Us, DES daughters, are just coming into the stage to where they can now do more research and to let you know to that after the age of 40 we are more suseptible to breast cancer than the average person. I found a link that you can read up on and if you want support they will help with that also.
http://www.aafp.org/afp/20040515/2395.html
check it out it may answer some questions you may have

MickeyVicki · Answer

Well, hello there, my DES 'sister.'    Yes, DES was a drug given to mothers to prevent miscarriages and pre-mature births.  Yes, long before the doctors stopped using the drug in the USA, other countries had banned the drug because of the early know side effect on the reproductive system!!! 

If I recall my old research correctly, then the most common side effects of this drug are 1) deformed reproductive systems and genitals, and 2)  reproductive system cancer, of the vagina and penis.    The DES children most effected seemed to be boys born with  small, poorly formed genitalia, and girls who later developed vaginal cancers in their late teens and early twenties.   Not all children exposed to the drug had any effects, however.  Nearly twenty years ago, there was a class action lawsuit, but I did not know of my exposure to the drug until the action was over and the money divided.   

I, too, wondered if there was any connection with the endometrioma that I developed and the exposure to DES, but I did not find any reports or statistics making a connection.

New Information-DES Daughter

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