Please Read: Was your Mother given DES while pregnant?

Discussion in 'Fibromyalgia Main Forum' started by MemoryLane, May 18, 2003.

  1. MemoryLane

    MemoryLane Member

    FYI - This is important information which has been posted before, but there has been a CDC update on their recommendations. They now regard the possibility of Clear Cell Carcinoma to be a lifetime threat for DES daughters; no longer just through their teens and early twenties, as stated in the past.

    Read through the whole list, but especially # 7.

    DES (diethylstilbestrol) is a xenoestrogen (synthetic estrogen) given, between 1938 and 1971, to women during their pregnancy who were at high risk for miscarriage and eclampsia. This drug was never patented and never tested for long-term side effects. After the release of premature findings by a prominent Medical Research facility, the nearly 300 pharmaceutical companies who manufactured it dumped it on the market for use. No one ever did the calculations until much later, but the recommended dosage of DES given to these women was the equivalent of the effects of estrogen from 55,666 birth control pills. Further findings show, though the drug should have been limited to use after the 5th month of pregnancy, some women (including my mother) were given this drug as early as there second month of pregnancy.

    In 1971, it was found to be carcinogenic and though it is still manufactured and used today, it is no longer given to pregnant women. The National Institutes of Health estimates that about 4.8 million pregnant women took the drug between 1938 and 1971 and other sources estimate 5 to 10 million people were exposed to DES during pregnancy. Originally, the dangers were thought to only be a consideration for the first generation daughters of these DES mothers, but evidence now indicates that the children, grandchildren and great-grandchildren, both male and female, are suffering from the impact of this drug.

    More information is available on DES at the website for the National Cancer Institute and the National Institutes of Health, along with contacts for organizations and additional information. The NCI recommends that you should find out if you were exposed to this during your Mother’s pregnancy and report this information to your doctors. There are lawsuits, both class action and individual, still being filed against responsible parties.

    Risk Factors:

    1. DES Mothers - An increased risk of breast cancer. Current research indicates that the risk of breast cancer in DES-exposed mothers is approximately 30% higher than the risk for women who have not been exposed to this drug.

    DES Daughters - 40 times higher risk of developing clear cell adenocarcinoma of the vagina or cervix requiring hysterectomy or radiation.
    Twice as likely to miscarry
    Nine times more likely to have an ectopic or tubal pregnancy
    Five times more likely to have a premature birth

    DES Sons - Evidence of possible testicular abnormalities, such as undescended testicles or abnormally small testicles.
    Increased risk of testicular cancer
    Non-cancerous lumps on backs of testicles
    Possible fertility problems

    2. Uterine, cervical or tubal anomalies that cause:
    Primary infertility (never becoming pregnant)
    Secondary infertility (pregnant but can't carry to term) Miscarriage
    Premature delivery
    Preterm labor
    Ectopic pregnancy

    3. Vaginal anomalies, which cause:
    Constrictions or bands making intercourse difficult
    Adenosis (glandular growths) requiring,
    i. Multiple physician examinations and tests
    ii. Multiple cryosurgeries, biopsies and surgery

    4. Third-generation injuries associated with preterm labor or delivery resulting in premature birth and cerebral palsy, blindness or other neurological deficits or death of child.

    5. Infertility treatment due to infertility:
    In vitro fertilization
    IUI (Intrauterine Insemination)

    6. Psychological injury:
    Situational clinical anxiety
    Neurosis or psychosis

    7. Altered Autoimmune Reactions (endocrine pathway disruption):
    Two times more likely to develop Autoimmune diseases
    Three times more likely to develop Pernicious Anemia
    Three times more likely to develop Rheumatoid Arthritis
    Fives times more likely to develop Hashimoto's Thyroiditis (hypothyroidism)
    Graves Disease (hyperthyroidism)

    Some interesting side notes: Xenoestrogen exposed children were found to enter puberty much earlier, as early as age 8, than children who were not exposed. Does the word "Early bloomer" mean anything to anyone? It certainly brings to mind my painful and problematic experiences caused by the taunting of other prepubescent children.

    Xenoestrogen exposed animals showed a higher sex hormone cross-over between male and female animals. Males showed higher levels of female hormones than was normal; females showed more male hormones. That kind of makes you wonder about some things, too.

    [This Message was Edited on 05/18/2003]
  2. clueless

    clueless New Member

    I am a mother who took stilbestrol for 7 months of my pregnancy. My daughter had one son born prematurly at 6 and one half months and a daughter born at 7 months. The boy weighed 2#6 oz., the girl 3# + some ounces.The boy was in the hosp. for 3 months the girl two. This medicine should never have been given to pregnant women and especially not thru the 7th. month.Did it have anything to do with my health--I don`t know. My daughter had the lining of her cervix breaking down but by some miracle rebuilt it self. She is totally against the doctors profession + has`nt had a papst smear since 1991.Go figure!!! it worries me to death!!!!
  3. Notonline

    Notonline New Member

    but am not sure how to find out for sure. I was born in 1967, and my mother had lost 2 previous children (both at 6 months) before me. She remembers being given thyroid medication during her pregnancy with me, and also B12 shots, also she is not sure but remembers being given a little white pill, but she thought that was also for thyroid, she really can't remember what it was for.

    I have had two cervical surgeries for the presence of bad cells, fortunately not cancerous, before having my son (he was also born premature, due to severe preeclampsia).

    Does anyone know how you would start to find medical records on something like this...this far back??

    The Dr. is no longer living, and had no partners in his practice, which was closed after his retirement some years prior to his death.
  4. Kathryn

    Kathryn New Member

    How do you get medical records from 50+ years ago? All I know is that my mother had 4 miscarriages between my older brother & myself. I suspect that she was given something, but who knows what? I have no idea of how to start looking for records. Any suggestions welcome.
  5. Hidn

    Hidn New Member

    I am a DES daughter, for all of you who wrote saying they have no idea wether thier moms were gien it, there is a DES website which has all kinds of information about finding your records, also a mailing with other people who have been either given or are children of DES prescribed moms.
    Please read eveything you can on this drug,and let your doctors know you are a daughter/son etc.
    There are some signs that a doctor can look at and know (a hooded cervix for example) but if you dont have any overt signs it does not mean you werent affected!
    My mom took it with me, all my life I had problems with it, my younger brother and sister both have MS and my brother has Crohns as well. We dont even know if it effected later births! But I am not discounting this, my elder siblings have no autoimmune diseases at all.
    I hope you all continue to findo out wether you were exposed or not, but please remember blame is not what we need to concentrate on (I have heard of so many Moms being blamed for taking this, or Moms just feeling so guilty about having taken this) The government was behind a big coverup about this drug, and many more too I bet!
    Thank you for listneing to me :)
    Hugs to you
  6. MemoryLane

    MemoryLane Member

    Even if you have had a total hysterectomy (like me), you still need to have PAPs done yearly.

    The proper procedure for DES women is for the doctor to paint/stain with iodine (or the like) the cervix and vaginal walls and in particular the top area of the vagina. They need to carefully view these areas for spots of tissue that do not stain, as these would be the cancer cells. They remain unchanged while the normal tissue absorbs the dye. This procedure should be performed with a colposcope, which is a special microscope, in case they need to do a biopsy.

    Please, please, please educate your doctor about this. Even if you don't know for sure, your mother's history of miscarriages is a strong indication for DES exposure. Many women were very compliant in these times and you never questioned the doctors. My mother was a Registered Nurse and she had the same mentality and as a result was exposed to massive amounts of DES. Consider your Women's Health as if you have been exposed - your life may depend on it. Clear cell carcinoma is not something to ignore.

  7. MaryCecelia

    MaryCecelia New Member

    Thanks for posting this valuable info. I had just done a search on DES at this site and no matches were found; however, when I scrolled today's posts, I found this post.
    Anyway, I was born in 1973, but my mother knows she was given DES when she became pregnant with me. She had suffered a miscarriage and was given DES while carrying me. (By the way, I have fibromyalgia and mitral valve prolapse.) She said she felt better than she had her whole life while taking it, so when she became pregnant with my brother in 1980, she requested DES & was informed only that it was no longer prescribed.
    Also, strangely, her ob/gyn medical records from her pregnancy with me "disappeared" from the office. Since everything I read says DES was pulled from the market in '71, it's amazing it was prescribed to my mom in '73. (She's 100% certain it's what she was given.) I don't mean to sound like a conspiracy theorist, but it appears that some OB/GYN's continued to give DES.
    I told my rheumatologist about her having had DES, and he said, "The latest research shows no connection between the drug and fibromyalgia, and if you made it through your teen years w/o any gyno abnnormalities, you're safe." Well, the research I've read says otherwise. (It's so frustrating, as you all know, when we're more knowledgeable on certain issues than the "experts.")
    Sorry to ramble.
  8. TracyV

    TracyV New Member

    infertillity problems. I have some major problems in that area. Unfornatly my mother has passed away before I found out for sure. I remember she told me she had taken some type of med like this because she had a misscarrage a few months before she got pregnant with me. The reason she had told me was because I was having a miscarriage at the time, but at the time we didn't put the two together, she just wondered if they did anything like that now. After she had died I read about DES and tried to call the hospital where I was born and it was closed. I have no doubt that she was given this. I just pray it doesn't have any bad affects on my daughter.
  9. Notonline

    Notonline New Member

    I've been searching and found a couple of sites as you mentioned Hidn. My mother is not sure of what she was given when she was pregnant, and like so many others was taught to trust and not question her doctor. My father was the same way, and to some degree my husband is also like that...although after a few bad reactions to medications he now has me look up any side affects and proper usage before popping anything blindly into his mouth. He still gets angry with me though, for asking too many questions concerning my medical care sometimes.

    MemoryLane...I think I will follow your advice though and bring this up next visit with the Gyn just in case.

  10. Princessraye

    Princessraye New Member

    No my mother did not take it.
  11. MemoryLane

    MemoryLane Member

    Please, if you were born as late as 1972 and your mother suffered previous miscarriages...

    ...Please ASSUME you were exposed and take that stance from here on. The worst that could happen is that you would get extra attention during your PAPs. Take some information with you in case you get a young doctor, like I did recently, whom may never have known about this. He was very interested in what I showed him and thanked me because he had learned something new.

    REMEMBER - the Centers for Disease Control and the National Institutes of Health have extended this caution for LIFE, so don't let your doctor tell you otherwise, they are ignorant if they do.

    To Mary Cecelia -

    I am surprised and shocked to hear your mother was given this as late as 1972-1973, as the FDA had already banned it for use on pregnant women. This is grounds for malpractice. It is still used today, but for other conditions and usually to treat Prostate Cancer in men.


    [This Message was Edited on 05/20/2003]
  12. MaryCecelia

    MaryCecelia New Member

    While researching DES on the net last night, I came across a timeline regarding it. It said that even after the FDA warned drs., some continued to give DES. Guess mine was one of them. Plus, he prescribed it up until I was born--not even stopping at the 5 month mark as the FDA suggested.
    The doctor has since died, and perhaps I wouldn't have survived if my mom hadn't taken it. (At least that's what I'm telling myself.) I will take this info with me to the next gyno. appt. Thanks again for sharing this!!
  13. JaciBart

    JaciBart Member

    My Mom took Des while pregnant with me, she is gone now, died from Cancer 10 yrs ago so I cannot ask her anything about it but while she was alive we had the discussion about it.

  14. MemoryLane

    MemoryLane Member

    There are DES attorneys available, if anyone wants to pursue this avenue; you can go class-action or individual.

    For myself and my mother, we are still trying to get her medical records and have just enlisted the help of our state congresswoman. We will consider litigation at that point.

    Good Luck to all of you and God Bless,

  15. Hidn

    Hidn New Member

    to women who had previous miscarriages! It was also given to women who have delivered healthy term babies. I dont know if it was an experiment or not, but they told some of the women that is will help them have a "heathier" baby!
    The booklet they handed out even had a picture of a beautiful baby on the cover. (See what DES can do for you?)
    Please bring it up and let your OB/GYN and your PCP know you are a child whose mom was given DES. A lot of doctors just say, it is nothing, but now with the CDC doing some research on it maybe they will pay attention. I do hope so.
    Hugs to you
  16. Bambi

    Bambi New Member

    but she had a terrible pregnancy according to her anyway. She had my dad get a vascectomy in 1949 because she did not want a second pregnancy that much. I know
    that if there was something that she was
    offered might have made her think it would give her an easier time of it she would have jumped at it. She tried to scare me
    out of childbirth with her stories of carrying and delivering me. I think she was just not cut out for mothering material. I've never had any problems like
    those listed, but will make sure and ask
    the gyn to take a closer look next time I
    get a pap smear. I don't do them often. I
    hate bad news. Not a real bright approach to personal health care I know.Hugs, Bambi