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Women's Health Need a place to discuss the changes going on in your body? This forum is dedicated to the issues only a woman deals with.

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Old 01-09-2003, 08:50 AM
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DES Baby

Just wondering if anyone else was a DES baby. Note - DES was a hormone given to mothers (back in the 1950's, 1960's and what I've been told, up until the 1970's), that had complications of miscarrying. I am a '57 baby and have DES exposure. I am trying to find out, with not much luck, how the second generation, such as my daughter of 13, might be effected. I have contacted DES Action and numerous Drs., including the one that delivered me, but no help. Some reports no effects on 2nd generation lab mice, but guess what, my DD is not a mouse! I have had to be checked for cervical cancer due to the DES, since I was 18. Just not wanting my daughter to go thru the stress I did. Cancer scares, and pregnancy complications with the DES exposure. I want to keep her up to date on things. If anyone has any suggestions, I'd be very grateful. Thanks!

wildchild
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Old 01-19-2003, 09:21 AM
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DAUGHTER OF DES

HELLO. I AM A DAUGHTER OF DES. MY FATHER WAS IN THE MILITARY IN ALABAMA WHILE MY MOTHER WAS PREGNANT WITH ME. SHE STARTED TO BLEED AND THEY GAVE HER DES TO STOP THE BLEEDING AND A POSSIBLE MISCARRIAGE. MY MOTHER IS A NURSE AND HAD KNOWLEDGE OF THE MEDICATION SHE WAS GIVEN. WHEN I WAS 12 I STARTED MY PERIOD AND HAD HORRIBLE PERIODS. HEAVY FLOW, PERIODS THAT LASTED 7 TO 10 DAYS, HORRIBLE CRAMPS, AND VOMITING. MY PEDIATRICIAN DIDN'T DO ANYTHING ABOUT IT. MY MOTHER TOOK ME TO A NEW FAMILY DOCTOR AND HE IMMEDIATELY TOLD ME TO SEE A GYN. HE DID NOT DO AN INTERNAL EXAM BUT SAID THAT HE FELT A LARGE "LUMP" IN MY SIDE. THE GYN EXAMED ME AND DID AN ULTRASOUND. MY LEFT OVARY WAS ADHERED TO MY ABDOMINAL WALL DUE TO ENDOMETRIOSIS. THEY HAD TO DO A LAPOROSCOPY AND CLEAN OUT ALL THE SCAR TISSUE.

IN MY TWENTIES I DEVELOPED AN ABNORMAL PAPTEST. IT WAS STAGE 3 PRECANCEROUS. THEY HAD TO USE LIQUID NITROGEN TO GET RID OF IT.

I HAD NO PROBLEMS GETTING PREGNANT WITH MY FIRST CHILD BUT WHEN I WENT OFF THE PILL TO GET PREGNANT THE SECOND TIME MY ENDOMETRIOSIS CAME BACK. IT DID GO AWAY WITH THE PREGNANCY. AFTER MY THIRD CHILD MY OB/GYN SUGGESTED THE DEPO-PROVERA INJECTION. I HAVE NO PERIOD NOW, THEREFORE, NO ENDOMETIOSIS. I LOVE THIS SHOT!!!!!!! NO PMS EITHER!!!! I KNOW MANY PEOPLE HAVE HAD PROBLEMS WITH THIS SHOT HOWEVER.

MY PARENTS TRIED TO GET MY MOTHERS MEDICAL RECORDS FROM THE MILITARY. THEY WANTED IT CONFIRMED THAT IT WAS DES THAT SHE WAS GIVEN. FUNNY... THE BUILDING THAT HOUSED THE MEDICAL RECORDS HAD BURNED DOWN AND THEY HAD NO WAY OF GETTING ANY OF HER RECORDS.:mad: THEY INSISTED THAT MY MOTHER COULDN'T HAVE BEEN GIVEN DES AS IT HAD BEEN PULLED FROM MARKET BY THIS TIME. BUT MY MOTHER KNEW WHAT SHE WAS GIVEN.

I AM SORRY THAT THIS IS PROBABLY ONLY MAKING YOU WORRY MORE. IT IS NOT VERY ENCOURAGING. I WORRY ABOUT MY OWN DAUGHTERS BECAUSE THE DAMAGE CAN BE PASSED ON FROM WHAT I HAVE READ. MY DAUGHTERS ARE ONLY 9 AND 4 SO I WON'T KNOW FOR SEVERAL MORE YEARS IF THEY WILL HAVE ANY LASTING SIDE EFFECTS FROM THIS HORRIBLE MEDICATION.

GOD BLESS YOU AND YOUR DAUGTHER!
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Old 01-19-2003, 06:08 PM
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My mother had a number of miscarriages and was given DES when pregnant with me in 1956. She stopped taking the drug once she reached the 2nd trimester. The only effects I've had was a mis-shaped uterus that gave me pre-term labor and a premie. With my second pregnancy I had my cervix stitched shut, took terbutaline, and monitored for contractions twice a day for the last 3 months. To my understanding, the DES only affects the baby exposed to it. No affects to the mother taking the drug and NO AFFECTS TO FUTURE GENERATIONS. DES was thought to be a wonderful drug and was even given to pregnant women to make normal pregnancy more normal. (Wow! Does THAT make sense!!!) Side effects were noticed such as un-descended testicals, but the drug was still used for years! When the DES babies became adults and were found to have sterility problems, only then did the medical community find out how awful the drug was and it was taken off the market.
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Old 01-20-2003, 01:30 PM
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DES

I am a DES baby. Twelve years ago I had an 8+ pound dermoid tumor removed from my ovary. Dermoids are very unusual in people over 18. They are gross tumors: they contain teeth, bone fragments, hair, etc. I have often wondered if it was from the DES exposure. My mother died of cancer at the age of 53 or 54 (30 years ago). Are there tumors or cancer in your family? I have read that DES does affect the 2nd generation (our children). My daughter needed a cone biopsy at the age of 20 or 21. Also, Amy has severe endrometriosis (excuse the spelling). The information that I have read also states that it affects boys, although since I don't have any sons, I did not read that part of any of the articles very well. I believe it made an increase in the number of testicular cancers. I had a hysterectomy with the tumor removal, but have also had suspicious mammograms, and one biopsy. I am anxious to see what others have to say about their experience. I go for an ultrasound of my breasts Feb 14th and I am already nervous.
Prayers welcome.
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Old 01-30-2003, 08:38 PM
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I am 56 years old. My mother was 40 when she had me. I do not know if my mother was given this drug. What I'd like to say is it was just 10 years ago, long after my hysterectomy (?) in my mid twenties, that I realized my 56 days or so between periods meant that one of my ovaries was not functioning. I had 6 pregnancies, 3 of which I lost. My 3 children are now 33, 34 and 36. My 33 year old son was hyperactive as a young child. He was given Ritalin, until I heard of children commiting suicide who also was on the drug. So I flushed it. He is a normal all American guy who has a very responsible job. I'm very proud of him. My oldest daughter needed surgery when she was 3 days old, because they knew something was wrong and a Dr. they called to consult, cause I didn't have a Dr. for her yet, said she had hyland membrane disease ( I know it's spelled wrong), which is or was in 1966, fatal. President Kennedy's baby died of it. Anyway, they didn't have to feed her until she was 2 days old, they had an IV in her head. When they tried to feed her, she swallowed it and stopped breathing. They brought up an xray machine and saw with dye after they aspirated her immediately, that her esporagus was as if it were cut. So they called in a woman surgeon (I went, Oh my God, a woman), well she asked to take us in a private room and she wanted to ask questions. As soon as she opened her mouth, I knew this was the woman I wanted for my baby. Her name was Rowena Spencer, M.D. The first woman surgeon in Louisiana! EVER!! She said that before she operated, my husband & I had to dress in greens, wash our hands, and hold her so she knew we were there for her and loved her. I was scared if I held her and she died, it would be very tramatic for me, but it was so wonderful to hold my little baby girl, who was 3 days old before I could hold her. Needless to say, after 3 days the Dr. said she'd have a very good chance to live! And today she's been an R.N. since 1989! She's beautiful on the outside as well as the inside. My second daughter was fine when she was born. When she was about 9 months old, both my mother and mother-in-law were over and when I went to change her wet diaper, they wanted to know what that awful smell was. I didn't notice anything cause I changed her all the time. Her urine was full of pus. She was on Gantrasin and so many other liquids to kill all the gus in her bladder. Then they tried to do something in surgery to open her tubes from her bladder cause the urine would back up into the bladder and become stagnated. The operation (through her uretha) didn't work. So she kept seeing the Dr.'s and this went on for another year, by then she was close to 3. They operated again the same way, and it was successful! She graduated college and went back about 5 years later and got her R.N. Oh, and besides my son having an ingunial hernia fixed when he was 3 months old, my kids are all fine, healthy adults. My oldest will be giving me my 5th grandchild in June. That's 3 for her and 2 for my other daughter. So, I just wanted to let that mother know that her children can be happy, healthy adults. I wish her great happiness! Thanks for "listening."

And please excuse my awful spelling!
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Old 07-06-2003, 03:14 PM
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Me too!

I was born 1970- when my mother (40) was pg with twins. She was given the DES shot, but had no clue that she was carrying twins until they put her "under" to deliver- my twin was deliver in the sac- it didn't burst. He/she didn't develop past 4 months, about the time of the shot. She was told at my first doctor checkup that she delivered 2 babies. (This has really torn my mother up to know that she didn't know and couldn't properly bury the baby.)
Anyway...fast forward... I have had many cysts along the way, awful periods, etc. My first child was conceived pretty easily. My second wasn't. The doctors suspected the DES and even said that I was going into pre menopause at 31. We did the infertility drugs for a while and was successful. Now my periods are back and beginning to wear on me. I can see me having a hysterectomy by 40, if not earlier.
I know that my mother had to do what she thought was right at the time, in order to keep from losing me-Oh, how I am grateful. But she really feels guilty about the loss and for my troubles. Thank God for new technology that maybe no one else will have to go through this again.
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Old 07-07-2003, 12:07 PM
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DES Babies

Ratpack: I read your entry 2 times. It seems so awful that the doctor didn't tell your mother right away what had happened. Then it was so cruel to tell her later. What a jerk of a doctor.
He did not let her make her own decision of what to do with this stillborn child. Heartless man. Should have gone into some other field of work. Terrible.
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Old 07-07-2003, 12:21 PM
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I agree.. and I think he is now retired or has already passed on. During this time- they used to knock the patient out to deliver. So, mom was not aware at all. Also, the nurses just thought that it seemed odd that there was an empty sac- the baby had basically dissolved some. They were not aware that I was even in there until about 10 minutes later. They just thought that the first one was a "blighted ovum" or something like that.
She believes that it would have been a girl- she had her fortune read for fun years ago and it said that she would have 2 girls and 2 boys. She already had the boys.

What is really weird....5 of my mother's sisters carried and delivered the same way. Carried twins and one didn't develop. Only one of them was successful in having twin boys. Each of them received the DES.
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