Vain I

My mother was probably on DES when she was pregnant. Four years ago, I had a total hysterectomy for CIN III that did not resolve after 2 LEEPs. The cervix, when removed, did not have clean borders and subsequent biopsies of my vaginal canal have shown inflammation. My latest biopsy showed VAIN I (Vaginal intraepitheleal neoplasia) and I am scheduled to have laser surgery next week. Does anyone have any experience with VAIN or with vaginal laser surgery? (Other info: I've only had one sexual partner in my life; I'm 51.)

Mary,

There is a very good support group and information site specifically for DES daughters.
It is DESaction.org. I too am a DES daughter had my hysterectomy 2 weeks ago for a AGUS pap.
Good luck.
Joy

HI,

 

Our cases are so similar.  My mom was definitely on DES.  Although

the doctor said my CIN111 was unrelated to the DES.  I find this

weird.  I did read though that a glandular cancer is caused by DES in

the vagina.  Anyways I had a total hysterectomy with clear margins and

thought I was ok for awhile.  At my 6 month checkup after the operation

I was told I have LGSIL.  I do not know where in the vagina since

my doctor is away.  The nurse says the doctor wants to see me in

three months for a repeat pap smear.  What do you think?

Do you have a gyno oncologist or just a gyno?  I have a gyno

 

Thanks,

Donna 

 

 

 

 

 

On 3/5/2007 Donnamar wrote:

HI,

 

Our cases are so similar.  My mom was definitely on DES.  Although

the doctor said my CIN111 was unrelated to the DES.  I find this

weird.  I did read though that a glandular cancer is caused by DES in

the vagina.  Anyways I had a total hysterectomy with clear margins and

thought I was ok for awhile.  At my 6 month checkup after the operation

I was told I have LGSIL.  I do not know where in the vagina since

my doctor is away.  The nurse says the doctor wants to see me in

three months for a repeat pap smear.  What do you think?

Do you have a gyno oncologist or just a gyno?  I have a gyno

 

Thanks,

Donna 

 

Hi, Donna! I have a gyne-oncologist. Since I last wrote, I had laser surgery. The precancerous cells (VaIN I to III) keep recurring. We've talked about topical chemotherapy (5 FU) but we've decided to watch and wait. I have no symptoms, for which I'm grateful. Regarding DES, I contacted the DES support group, but because there is no record of my mother's prenatal care (the hospital closed years ago; her physician died; and the State Medical Association cannot help me), I am not sure what else to do, other than continue monitoring my progress (or lack of it) with my doctor. I wish you lots of luck and good health. Hang tough.