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Pinkie's First Time Introduction Pinkie's First Time Introduction

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Unread 04-06-2002, 12:52 PM
Pinkie: DES Daughter

Hello Ladies,

I’m scheduled for July 19th due to DES Daughter (anyone out there also DES Daughter, I’d like to hear from you):

1) Period last approx. 1 ½ weeks
2) Bleeding 3-4 days after intercourse
3) DES Exposure on cervix

I’ve also had my crying moments (mostly in private). I’ve kept this mostly to myself, but I’ve found that the more I talk about it, I build my support system. Hubbie has been supportive.

I have to tell a story...
On Easter weekend, I went with Hubbie to his parents' house. My parents came also. But before my parents arrived, as you would expect, the conversation came to my hyst. At first, I didn't appreciate it, but I found that as I talked about it, the support group began to build. I also found out then that my sister-in-law who is a doctor specializes in women's issues. I told her that I may be ringing her bell in the coming days.

When Hubbie and I got home, I began to do my research on both hyst and DES Exposure on the Internet. What I found out on both, I didn't like, so I decided to create a smoke screen. By this time, I'm getting major cold feet. My smoke screen being that after doing my research (all of two hours), I decided that I would cancel the surgery. So Monday morning, I left a vm with Hubbie at work, Mom at home, GYN at the office, and the surgery scheduler. Hubbie was practically jumping and leaping throughout the evening. He really doesn't want me to have this surgery due to his own past surgeries (15 total up until he was 18 years old due to spina bifida). Surgery scheduler called back stating she had cancelled it. Only left was my mom and the GYN. Unfortunately, you moms have built-in radars that can see through smoke screens, and my GYN left 2 vm on my cell phone on Tuesday. Well after talking to both of them on Tuesday, the consensus was that the decision is totally up to me. Whether I cancel the surgery and the DES Exposure on the cervix could eventually turn into cancer, or go through the surgery knowing that there will be risks involved. I was to think of it as an airplane. Everyone knows the risks. But they get on that airplane not thinking of the risks, but where that plane will take them. It will take them to the other side. Also, my GYN told me that he will keep it on the books (that is scheduled), and that I have up to the night before to cancel, if that is what I really want to do. I said fair enough. So, needless to say, the surgery date has been rescheduled for July 19th at 1:30PM and I’m to be there by 11:30AM.

My first letter didn’t go through and I’m mad! However, I recorrected this letter and what you are now reading is what I wanted to say initially. I’m getting more and more hip on how the system works.

This website has been very comforting to read all the postings, both pre’s and posts!!!

I’ve now mailed my request for both books for HysterSisters and the t-shirt.

Take care,
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Unread 04-06-2002, 01:01 PM
Pinkie's First Time Introduction

Hi, Pinkie!
Your Hystersisters are here to help! I am sure you will hear from someone with DES experience.
July is a long way off, try not to get too anxious. There's a lot to be learned in the next few months, and you've come to the right place.
Unread 04-06-2002, 01:07 PM
Pinkie's First Time Introduction

yes hon it got through
best wishes to you
would you tell us what a DES daughter is
for the ones whom don't know
thank you very much
your surgery is just 3 days after my B-Day
I will keep you in my thoughts
hugs ladypeewee
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Unread 04-06-2002, 01:14 PM
You did it


Hi and Welcome. This post as you by now know got through okay. It took me a few goes and experiments before I got the hang of how to do it as well.

Like ladypeewee I don't have any knowledge of DES. Could you please explain to us what this is?

Good to see you are reading both pre and post op threads. I did the same thing pre op and just learnt so much that I really had no idea about.

There is also an online chat room where you can talk to ladies real time. There are a wonderful group of ladies who visit the chat room (plenty of hugs for everyone). If you feel up to it, come join us in chat (be warned - it can be very addictive).

Regards and best wishes.

aka buckkieofoz
aka HSChat Gail
Unread 04-06-2002, 01:22 PM
DES Exposure Information

This is from the National Cancer Institute Website:

1. What is DES?
DES (diethylstilbestrol) is a synthetic form of estrogen, a female hormone. It was prescribed between 1938 and 1971 to help women with certain complications of pregnancy. Use of DES declined in the 1960s after studies showed that it is not effective in preventing pregnancy complications. When given during the first 5 months of a pregnancy, DES can interfere with the development of the reproductive system in a fetus. For this reason, although DES and other estrogens may be prescribed for some medical problems, they are no longer used during pregnancy.

2. What health problems might DES-exposed daughters have?
In 1971, DES was linked to an uncommon cancer (called clear cell adenocarcinoma) in a small number of daughters of women who had used DES during pregnancy. This cancer of the vagina or cervix usually occurs after age 14, with most cases found at age 19 or 20 in DES-exposed daughters. The upper age limit, if any, for DES-exposed daughters to develop this type of cancer is not known, and some cases have been reported in women in their thirties and forties. The overall risk of an exposed daughter to develop this type of cancer is estimated to be approximately 1/1000 (0.1 percent). Although clear cell adenocarcinoma is extremely rare, it is important that DES-exposed daughters continue to have regular physical examinations.
Scientists found a link between DES exposure before birth and an increased risk of developing abnormal cells in the tissue of the cervix and vagina, although the significance of these findings is controversial. Physicians use a number of terms to describe these abnormal cells, including dysplasia, cervical intraepithelial neoplasia (CIN), and squamous intraepithelial lesions (SIL). These abnormal cells resemble cancer cells in appearance; however, they do not invade nearby healthy tissue as cancer cells do. These abnormal cellular changes usually occur between the ages of 25 and 35, but may appear in exposed women of other ages as well. Although this condition is not cancer, it may develop into cancer if left untreated. DES-exposed daughters should have a yearly Pap smear and pelvic exam to check for abnormal cells.

DES-exposed daughters also may have structural changes in the vagina, uterus, or cervix. They also may have irregular menstruation and an increased risk of miscarriage, tubal (ectopic) pregnancy, infertility, and premature delivery.
Unread 04-06-2002, 01:27 PM
DES Daughter also

Hello Pinkie,

Welcome to Hystersisters!!! You have found a great support group here.

I am also a DES daughter. Gail and ladypeewee, DES is Diethylstilbestrol which is a drug that was given to our mothers when they were pregnant. This drug helped women back in the 50, 60 and 70 to carry their pregnacies to full term. This drug is now showing effects on the sons and daughters. In the daughters causes, infertility, cancer, abnormally shaped cervixes to name a few.

Pinkie, I am 5 weeks post-op from a TAH/BSO. I had the infertility and cervix of a DES daughter. Thankfully not the cancer. The reason for my TAH was endo, polyps, fibroids and adenomyosis. You have alot of time between now and July to do all the reading you can about DES and Hysterectomy. What type of surgery are you having? You will found that this site is a great comfort. Email me if you have any questions.

Unread 04-06-2002, 02:16 PM
DES question

Was DES also the drug that caused limb abnormalities in babies during those years?

I remember my Mom telling me several years that somehow the question of whether or not she took the drug that caused these problems in children began to bother her big-time. She had had some trouble with, I think, a pregnancy before. Anyhow, I remember Mom being practically frantic trying to find out or remember if she'd had the drug. I don't remember what she found out.

Anyway of finding out all these years later whether or not our Mom took this drug?
Unread 04-06-2002, 03:43 PM
Pinkie's First Time Introduction

Laura Jean,
It was thalidomide, not DES, that caused all the limb malformations.


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