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Any other DES daughters? Any other DES daughters?

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Unread 05-20-2004, 05:31 AM
Any other DES daughters?

My mother was prescribed DES when she was pregnant with me (1952-53). I have internal deformities that would have made it very difficult for me to become pregnant, and those same conditions made it impossible for my ob/gyn to do a biopsy that my oncologist requested. I have a cyst on my right ovary that was discovered in February. The oncologist believes that one or more of the following is true: the cyst has grown rapidly since Feb.; blood has backed up into my uterus because of the DES malformations; there is another mass in my abdomen.

DES daughters are at risk for another type of cancer, not ovarian. Fortunately, my ob/gyn and the oncologist to whom she referred me are quite knowledgeable about DES. My hysterectomy is scheduled for Wednesday, May 26, at UAB in Birmingham, AL. I have great confidence in the surgeon, but I have never been in the hospital (except for a couple of ER visits) in all my 51 years! I am frightened, but my husband and I know that we are in God's hands.

Susan S.
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Unread 05-20-2004, 06:50 AM
Any other DES daughters?

I'm a DES daughter too. To my knowledge, I didn't have any internal deformities, though I did have a "prolapsed uterus." In any event, I never could get pregnant, though according to the doctors there was nothing physically preventing it. My hyst went smoothly, no problems. I'm much more comfortable and active now, with my humongousoid fibroids gone.
Unread 05-20-2004, 08:46 AM
Any other DES daughters?

I'm in this club, too. I'm very lucky that I didn't have deformities, and I had no trouble becoming pregnant but my gyn/onc did mention that although I didn't have the DES-linked clear cell cancer, DES exposure does somehow create an environment more favorable to vaginal/gyn cancers.

And now, to think I have to worry about dd as a DES granddaughter......I hate this drug. And it didn't even prevent miscarriage, which is how it was sold to my mother.

There is a great site -- -- that has a lot of information. NY state used to have a DES registry, which I was part of. I'll never forget--my first gyn exam was not only well-attended my medical students, but it was also my first biopsy. Welcome to womanhood!

I'm sorry you're facing surgery, but I'm sure all will go well for you. It's a wonderful (and rare) thing to have a gyn who is up on DES matters.
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Unread 05-20-2004, 12:26 PM
Any other DES daughters?

I am also a DES daughter - I also didn't have any deformities, but after my son was born I proceeded to have three miscarriages. Was unable to have another child. Then the uterine prolapse and cancer. Geez all that and I am not even 42 yet!
Unread 05-20-2004, 10:34 PM
Any other DES daughters?

I am also a DES daughter.I too have internal deformities. When I was trying to get pregnant in 1984 my gyn was doing some kind of balloon test and he asked me if I was DES exposed. He explained it to me and I asked my mom and she did not know. She called her doctor who had already retired and he went and dug his records out of the garage. Her records showed all of the doses that she had been given. She passed away in 1999 of uterine cancer. I always wonder if this could have affected her.

It 2003 I was diagnosed with cervical cancer. I had never had a bad pap in 21 years. My gyn was totally shocked that it became invasive in about 8 months.My oncologist believes it grew so fast because of the DES, I was referred to an oncologist and they together did a radical hysterectomy. This revealed that I also had 11 fibroids and a second spot on my vagina. I ended up having to have radiation because of this second spot. But I do thank God they did the radical and found the second spot or else it may have progressed to where it would have been incurable.

When I had the hysterectomy that was also the first time I had ever been in the hospital. I was never able to get pregnant because of the DES. I am now 1 1/2 years post op and doing great!

Best of Luck to you!
Unread 05-25-2004, 09:22 AM
DES daughter too...

Hi! I too am a DES daughter. Mom delivered a full term decomposed baby girl 5 years prior to me. Was told she would no longer be able to become pregnant. Guess what?! Then came me. She was on DES to prevent similar...

I did not have any trouble getting pregant (twice - both times while on the pill). However, went into pre-term with both children. Dialated to 8 cm by 6 months with each. On bedrest... not fun, but well worth it. Love my girls.

However, our 2nd dd, has had multiple complications -- most unexplainable by her mds & they were good. Even went to Mayo with her... She has had 9 surgeries & is 11 years old. She's a tough cookie. We were told she would never walk, talk... she just got accepted into the gifted program at her school. We are so proud of her (sorry.)

I just had my hysterectomy on 5/12/04. And am still recovering... one day at a time, right?!
Unread 05-25-2004, 01:41 PM
Any other DES daughters?

I may be a DEs daughter too. My Dr was surprised at how my vaginal tumor was suddenly there and how quicky it grew. He asked if my mom had taken DES and when i asked her she said her Dr has given her several different hings to take during pregnancy but she never asked what they were. i dropped the matter quicky because I didn't want her to feel bad, but wonder..... Is there a test that detects DES exposure. Could I have passed it on to my daughters or for that matter my sons?
Unread 05-25-2004, 03:01 PM
Any other DES daughters?

There is no test for exposure. And yes, you may have passed it on, but there is no solid evidence about second generation DES children; epidemiologists are just tracking things. Go to the website I mentioned above, and you'll get more complete information.
Unread 05-25-2004, 09:29 PM
Any other DES daughters?

Hi, this thread is very interesting to me. I know that my mom took some medication while she was pregnant with me, and she said it was so she "would not lose me" . I too, have never pressed her about it since my diagnosis, as I would never want her to feel in any way responsible. And she would, if she knew it could have affected me in any way. I was born in 1967 in that does fall into the time period before DES was discontinued. I guess I am always trying to figure out in my mind, how this could have happened, but I guess it really does not matter now. I have never been told that I have, or had, HPV (which does cause most cervical cancer ) , but did have squamous cell , which DES does not seem to be related to. I did miscarry my first pregancy and went into premature labor (bedrest!) with my first daughter. My cancer also appeared only after 10 mos. since my previous pap and pelvic exam, and surprised my gyn. totally. I guess I should ask my gyn. onc. about all of this, and my mom. I am very thankful that it was caught early 1b, and not spread, and that I will soon be celebrating 2 yrs. cancer free!! I wish I could just go on and not think about it so much...

Radical hysterectomy, June 2002, cervical cancer, 1b
Unread 05-25-2004, 11:28 PM
Any other DES daughters?

I'm a DES daughter too. My mom had two miscarriages before getting pregnant with me. She took the DES while pregnant with me to help prevent a miscarriage. I was born 6 weeks premature.

I often wonder if the DES exposure has contributed to my variety of health issues.

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