Did your mother take DES to keep from miscarrying you?

Discussion in 'Fibromyalgia Main Forum' started by petsrme, Apr 8, 2004.

  1. petsrme

    petsrme Member

    I am posting this on this board and the lupus board because it can affect both of these DD. From the 1930's to 1971 pregnant women were given a hormone called DES to keep them from miscarrying their baby. My mom had this shot because she was losing me. If not for this shot I would not have been born. But they found in 1971 that this was a dangerous thing and stopped using it. It caused many problems (mostly reproductive and cancers in reproductive organs) in the women and now their grown children. Mostly the daughters. They are called DES daughters. The CDC has determined it can cause cancer of cervix, misshapen uterus, and pregnancy problems. They have also found that DES daughters have a higher rate of autoimmune diseases such as lupus and arthritis.

    I sometimes wonder if this is what is causing the rise in Fibromyalgia, arthritis and lupus. Millions of women had this shot. I have not explained this well, but you can find more info about it at the Centers for Disease Control website and you probably can do a search of the web about it. I wish I remembered how to spell the long words that DES stand for but I can't. Sorry. If any of you have ever heard of what I am talking about please me know. Ask your mothers if they had this shot. It would be interesting to find out if this is a common thing some of us share.

    I look forward to hearing any of your ideas or information. Like I said I don't know a lot about it. I do know if you are a DES daughter you are supposed to tell your gyno so they can do a special pap smear each year looking for the cancer it causes.

    I later found out this was given pill form too.
    [This Message was Edited on 04/08/2004]

    I found this on a site called desactionorg. It tells a little more about what I was talking about.

    Can DES affect the immune system?
    Some studies have shown an increased incidence of autoimmune diseases (such as lupus, rheumatoid arthritis, and Graves Disease among others) among DES Daughters. It is quite possible DES affected the immune system as well as other bodily systems, and researchers are studying this question further. When results are in, they will be posted on the CDC's DES Update website at www.cdc.gov/DES and published in DES Action's newsletter, the DES Action Voice.

    All DES Daughters (women whose mothers took DES while pregnant with them) have a lifelong risk for a rare cancer of the vagina or cervix called clear cell adenocarcinoma. This cancer is practically nonexistent in non-exposed women in this age group, and occurs in about 1 in 1,000 DES Daughters.

    DES Daughters should have an annual special pelvic exam to detect this cancer. DES Action's website at desaction and the CDC's DES Update website at cdc.gov/DES have information about the exam for both patients and their doctors.

    New research indicates that DES Daughters also run an increased risk for breast cancer, so DES Action urges annual mammograms and clinical breast exams, as well as monthly breast self-exams

    [This Message was Edited on 04/09/2004]
    [This Message was Edited on 04/09/2004]
    [This Message was Edited on 06/24/2005]
  2. MemoryLane

    MemoryLane Member

    I too have wondered about this event in my and my mother's lives. Here's my original thread on this very topic.

    MemoryLane (631)
    Please Read: Was your Mother given DES while pregnant? 05/18/03 08:19 PM

    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.

    clueless (346)

    DES 05/18/03 08:43 PM

    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!!!!

    Notonline (228)

    I sometimes suspect this... 05/18/03 09:14 PM

    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.

    Kathryn (745)

    I'm in pretty much the same boat as Notonline. 05/18/03 10:31 PM

    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.

    Hidn (158)

    DES 05/19/03 03:26 AM

    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

    MemoryLane (631)

    I wanted to add something important 05/19/03 12:07 PM

    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.


    marycecelia (97)

    Thanks for posting this 05/19/03 07:35 PM

    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.

    TracyV (233)

    I learned about this while going thru 05/19/03 09:23 PM

    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.

    Notonline (228)

    Yes, thanks for the info.. 05/19/03 10:16 PM

    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.

    princessraye (490)

    No 05/20/03 02:19 AM

    No my mother did not take it.

    MemoryLane (631)

    To All and Mary Cecelia 05/20/03 07:47 AM

    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.


    marycecelia (97)

    To Memory Lane 05/20/03 04:24 PM

    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!!

    jacibart (1031)

    Yes, I know for sure 05/20/03 04:31 PM

    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.


    MemoryLane (631)

    Class Action Suits are Still Being Filed 05/20/03 05:00 PM

    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,


    Hidn (158)

    DES was not only given 05/20/03 06:24 PM

    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

    Bambi (421)

    I just don't know. My mother didn't remember 05/23/03 05:00 PM

    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


    [This Message was Edited on 04/09/2004]
  3. petsrme

    petsrme Member

    for all that info. I think there is definitely something to this and that it is behind a lot of my medical problems. By the way, they also gave this to girl's who were unusally tall to stop them from growing. I read this on the CDC site. Isn't that awful.

    My mom also said that she felt the best she ever felt while she was pregnant and took that drug. It was given in shots. pills and vaginal suppositories. She had the shot.
  4. petsrme

    petsrme Member

    anyone else have any info?
  5. MemoryLane

    MemoryLane Member

    Have you noticed how few doctors even know what this is? When I tell doctors I am a DES baby, they look at me like I am speaking in another language. I have only known one doctor that understood what was required for PAP smears and she took it very seriously.

    Others just grunt in response.

  6. Dee33K

    Dee33K New Member

    The best gyno I had was a wonderful Female in Atlanta that upon first examination of me said, your mom took DES didn't she? I was astounded! I said how did you know? Shementioned my "hooded cervix". No one had ever even told me I had one! At that point I had already had 2 children mind you! I knew my mom had taken DES but she had not gone over my records with me fully yet. I trusted that woman with my life. She never missed a trick! She was the one who spotted my cervical abnormality during a routine exam before the pap smear was ever even done. We did a leap procedure that year. Yes, I have had trouble. I make sure I get my pap smears done when I am supposed to. This would be wild indeed if the DES has a link to the Fibro. Let us know if you find any other info please. Do the class action suits extend back to 1955?

  7. ephemera

    ephemera New Member

    I was given DES for about 3 years during the 1970s to supposedly help with my painful periods. It never did zip & not til decades later did I get diagnosed with endometriosis. My gyn who prescribed DES, a man, never told me what it could do. Not until I went to a feminist health clinic did they say, hey, what were you doing with this? when I completed my health survey. Needless to say, I never went back to the jerk & tried to quickly get my mother out of his practice. Never went back to another male gyn either.

    I never had children, not that I wanted to.

    I do know a DES daughter who's had miscarriages & many problems.
  8. Dee33K

    Dee33K New Member

    the internet trying to find a site like this one for daughters of DES for support. I finally found something at least. You would not believe after reading the archieves how many of the women have either Fibro or MS!!!!!!! If the CDC does not eventually decide that DES does indeed damage the immune system simply from the numbers of all of us, I am at a loss.

    When I sat and read one woman's recount of her experience so similar to mine, I cried for an hour. It was my link to why I have Fibromyalgia and the pain I have experienced for the past year and one-half. As my doctor so aptly put it on my first appointment, "Honey, your wiring chassis is damaged, and it cannot be fixed"..... It was damaged in the womb. I never knew......Those shots and pills to have a "healthier baby. Who knew? Mom sure didn't, she just wanted a baby.

    Ladies, don't let this thread die. Keep bumping it. The lady I am talking to has found some relief from a book by Dr. John Lee and balancing her hormones in the natural way. I haven't had a hysterecemy but if you have or have already gone into menopause or pre-men as I am in it should help. I am going to buy the book. The website has helped me already.

    It looks good for men, as well. It has a good test for hormone imbalance.

  9. MaryCecelia

    MaryCecelia New Member

    I'm so glad this topic is back. I just had to have the HSG (stands for some huge word & was PAINFUL) test this week because of my mother being given DES pills. My gyn. wanted to check for any structural abnormalities due to DES and because I have heavy, painful periods.

    It was the 1st time I went to this gyn., who's been in practice for years, and I asked if he needed to do the special iodine stain pap, and he said, "No, we'll only do that if you have an abnormal pap, & I don't expect any problems because you probably would have experienced them by now."

    I left very aggravated because from what I've read, the last CDC DES statement warned drs. to be vigilant about specific pap smears for DES women their ENTIRE lives instead of just the teen years. I get so tired of being more aware of certain issues than the doctors, plus, he's the 3rd doctor I've seen over the last year to show such ignorance on the issue.

    Anyway, as someone above mentioned, my mother said she never felt better in her life than while given the DES. She was given it the entire 9 months because she had one miscarriage before me. I recently read it was only to be given the first 5 months of pregnancy. Thanks for bringing up this topic!
  10. MemoryLane

    MemoryLane Member

    It seems she has a malformed or mispositioned cervix. Her regular PCP usually does our Paps, as she is a lady doc and we really like her. When my daughter was being prepped, the doctor could not do the examine due to the abnormal position of the cervix. She said there was a special speculum needed for this and so she is sending my daughter to her own GYN, who is also a lady.

    She will be the third generation in our family for DES exposure. I have no doubt in my mind that this peculiar problem is related.

  11. petsrme

    petsrme Member

    So sorry to hear about your daughter. It sounds like she may have been affected. I feel DES is at the root of most of my health problems. I need to find a gyno who knows something about it. It seems hard to find any. Keep us informed of anything your daughter learns. Take care.
  12. cmcm

    cmcm New Member

    I too am a DES daughter. My mother was given this drug while pregnant with me for the entire pregnancy. I have had 6 miscarriages and my three successful pregnancies were high risk and complicated with heavy bleeding, incompetent cervix ( cervix stitched closed twice), preterm labor, preacclampsia (spelling?), and premature birth (with the last). I was also on complete bedrest for the entire pregnancies. I have to have paps preformed every 6 months due to abnormal paps in the past. I am now dx with Fibro, and have also been seen by a neuro for possible MS. Neuro couldn't totally rule out MS even though my MRI of the brain was fine. Due to my sx's, it is a wait and see what happens for now.
    I too believe all my health problems are directly related to DES.
    [This Message was Edited on 06/09/2004]
  13. petsrme

    petsrme Member

    bumping to explain post about my daughter.
  14. petsrme

    petsrme Member

    bumping to explain post about my daughter.
  15. PVLady

    PVLady New Member

    My mom took DES while pregnant with me. I am now age 54. I had more problems early on - was unable to carry pregancy to term, so no kids.

    I used to have colposcopy exams, but now my paps are all normal, for years.

    I always wondered if my fibro was in any way related to the DES exposure. I have always had allergy problems and hives, in addition to the fibro.

    Thank for posting this...I wll check out the DES Action website
  16. PVLady

    PVLady New Member

    My mom took DES while pregnant with me. I am now age 54. I had more problems early on - was unable to carry pregancy to term, so no kids.

    I used to have colposcopy exams, but now my paps are all normal, for years.

    I always wondered if my fibro was in any way related to the DES exposure. I have always had allergy problems and hives, in addition to the fibro.

    Thank for posting this...I wll check out the DES Action website
  17. kriskwon

    kriskwon New Member

    My mom also took this drug although she can't remember if it was in pill or shot form. She said all pregnant women at that time were given it if they asked for it. I knew this for 20 years or so, but never thought much of it. I have never been able to get pregnant, have had a full hysterectomy and have had FMS for 3 years. I'm gonna tell my doctor who is an elder man - I bet he remembers DES. That would be awesome if they could link the two because at least they would have some where to go from for a possible cure or better medicians to control it.
  18. kriskwon

    kriskwon New Member

    My mom also took this drug although she can't remember if it was in pill or shot form. She said all pregnant women at that time were given it if they asked for it. I knew this for 20 years or so, but never thought much of it. I have never been able to get pregnant, have had a full hysterectomy and have had FMS for 3 years. I'm gonna tell my doctor who is an elder man - I bet he remembers DES. That would be awesome if they could link the two because at least they would have some where to go from for a possible cure or better medicians to control it.
  19. elliespad

    elliespad Member

    Not to my knowledge. My mother passed away in '95 but neither my sister or I remember her saying she took DES.
  20. elliespad

    elliespad Member

    Not to my knowledge. My mother passed away in '95 but neither my sister or I remember her saying she took DES.