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Thread: DES and PCOS

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    Registered User elaina's Avatar
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    Question DES and PCOS

    When my Mother was trying to conceive me, she was given a drug called DES, which was later stopped by the medical community. I was born in 1966, and am part of a group called DES Daughters.

    Does anyone here have this in their background, and do you know if this contributes to PCOS?

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    Shattered Dreams! BeetleGirl's Avatar
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    I am a 3rd generation DES victim.
    I actually wondered the same thing though.
    I created a post a few months ago and only one person responded. http://www.soulcysters.net/showthrea...&highlight=DES
    I think it is a very interesting theory and wouldn't be surprised if there was some sort of connection.
    Though Stein-Leventhal syndrome was first diagnosed prior to them giving out DES but doesn't mean that there wasn't some other synthetic drug that may have been given prior to the DES days.

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    Registered User elaina's Avatar
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    Thanks for responding to me! There has to be more of us out there. I'm a first generation. Were you told you were "shaped" differently inside? I was told I was different inside of me because of the drug. Sad thing is, that drug did nothing to induce pregnancy. It should have never been given to these women who, I believe, were basically used as lab rats to test this stuff out.

    I'm going to mention the drug to my doctor. If she gives me any additional information, I'll be sure to post it.

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    i dont think there is since my family hasnt had it and i end up getting pcos. and like its been mentain. that it proably and i believe this. that pcos is in the genes.
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    Shattered Dreams! BeetleGirl's Avatar
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    I was never told that I was shaped differently. Nor to my knowledge is my mother.
    My mother on the other hand has been diagnosed with clear cell cancer.
    My grandmother was given the drug and told it reduced the risk of miscarriage but that pregnancy out of 8 pregnancies resulted in miscarriage.

    Many women have their own theories about PCOS but it is coincedental that so many women were given DES and so many women nowadays are diagnosed with PCOS.


    No one had to take DES and many women didn't but unless you come from a very long line of organic vegetarians that chances are it was consumed at one point or another by your relatives since it was drug that was approved by the FDA to be put foods. In 1959 the FDA finally banned the substance that was given to poultry, lamb, and livestock since 1941.

    It can be passed through the male or female side of the family so before declaring it was not taken make sure you are aware of both sides of your family history.

    To those that may be interested here is a very interesting timeline of DES

    Timeline: A Brief History of DES (Diethylstilbestrol)

    DES, diethylstilbestrol, is a drug that was given to millions of pregnant women, primarily from 1938 to 1971. This synthetic hormone was touted as a "wonder drug" and widely prescribed in the mistaken belief that it could prevent miscarriage. In addition to having no effect on miscarriage, it has resulted in health problems for the women who took the drug as well as their daughters and sons.
    1938: Diethylstilbestrol (DES) created. DES was the first synthetic estrogen ever synthesized; it was cheap to produce, more potent than natural estrogen, and could be taken orally. In the rush to make and market DES, Eli Lilly became one of the drug's major manufacturers. In America alone there were 267 drug companies that made and distributed DES and other similar synthetic estrogens because it was unpatented and easily produced. From the start, studies showed that DES promoted cancer in lab animals:

    1938: Mice exposed to DES developed breast cancer.

    1939: A rat exposed to DES developed mammary carcinoma.

    1939-1940: Mice exposed to DES were born with malformed reproductive organs.

    1941: DES approved for medical use in human beings. Despite the evidence from animal studies, the FDA approved the use of DES to treat vaginitis, gonorrhea, menopausal symptoms, and to suppress lactation - but not for use during pregnancy. Once FDA approval was granted for these limited uses, however, there was nothing to prevent drug salesmen from suggesting, and physicians from prescribing, DES for any other medical condition menstrual problems, morning sickness, infertility, and many other applications.

    1947: DES approved for use during pregnancy. At the prodding of the drug companies reacting to market demand, the FDA approved the use of DES during pregnancy. No controlled studies had been conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy. DES was initially recommended for women with conditions such as diabetes, or those at high risk for miscarriages; however, it was soon widely prescribed to women with no apparent problems at all, and was the active ingredient in some "vitamin" tablets given to healthy pregnant women.

    1952: Some scientists began to publicly question the efficacy of DES. The largest and best publicized controlled study of DES at the University of Chicago in 1953 showed it had "no beneficial effect whatsoever" in the prevention of miscarriage, and, in fact, DES brought about higher rates of premature birth and infant mortality. These findings were supported by several other studies done in the 1950s.

    1959: DES banned in chicken and lambs. DES was used widely in agriculture beginning in 1941 to fatten livestock and chickens. Exposed male agricultural workers suffered sterility and breast growth as a consequence. When high DES levels in poultry produced similar symptoms in consumers as well, the FDA banned the use of DES in chicken and lambs in 1959.

    Late 1960s: Six of the seven leading obstetrics textbooks stated that DES had no effect in preventing miscarriage in any group of patients. DES was still being prescribed to pregnant women and touted as a "wonder drug."

    1970: Unprecedented appearance of rare cancer in young women. A rare vaginal cancer, CCA (clear cell adenocarcinoma), began to show up in unprecedented numbers in young women. There were eight such cases at Massachusetts General Hospital in Boston alone. One of the mothers raised the question of whether her daughter's cancer might be connected to DES exposure in utero.

    1971: Doctors confirmed the link between CCA and DES. The findings of the Boston doctors were published in the New England Journal of Medicine, April 22, 1971. Only then did the FDA issue an alert advising against the use of DES during pregnancy. Even so, some physicians in the U.S. continued to prescribe it for a few years to pregnant women despite the FDA alert. Companies continued to sell DES overseas even after 1971; while it was no longer used in most western European nations by the late 1970s, DES continued to be sold through the 1980s in much of the rest of the world.

    1975: DES Action formed. A national non-profit organization representing mothers and children exposed to DES. The organization provides education and support so that individuals can discover if they are exposed, and to educate medical professionals so they can provide knowledgeable services to DES exposed people. In the U.S., DES Action volunteers lead 24 affiliate groups nationwide -- both state affiliates, and the DES Sons Network and the DES Third Generation Network. They are politically active in garnering support and funds for DES research. There are also DES Action affiliates in Britain, Canada, throughout Europe, and Australia.

    1979: DES banned in animal feed. Cattle breeders fought regulation of DES in feed until the Department of Agriculture finally banned it in 1979, but there were reports of its covert use through the early 1980s.

    1982: DES Cancer Network formed. The DES Cancer Network is an international, non-profit, consumer organization that addressees the special needs of women who have had clear cell adenocarcinoma of the vagina or cervix a cancer linked to exposure to DES before birth. The DCN provides recovered patients with ways to contact one another and to support new patients who have been diagnosed or are undergoing treatment. The DCN is also a support group to the family and friends of DES daughters who are clear cell cancer survivors as well as those who have lost loved ones to the disease. In addition, we serve as a resource to health care professionals and attorneys whose patients/clients have had clear cell cancer. The DES Cancer Network has been serving DES cancer daughters since 1982.

    1992: National Institute of Health (NIH) convened the first-ever meeting on the long-term effects of DES.

    1992: DES bill passed. Congress unanimously passed the DES Education and Research Amendment (chief sponsors Rep. Louise Slaughter [D-NY] and Sen. Tom Harkin [D-IA]), providing funding to the National Institute of Health for research on mothers and children, and for a public and physician education campaign.

    1993: Long-term DES research is expanded. The NIH began new studies on the long-term medical effects of DES, such as breast cancer in the daughters, immune system disorders, and reproductive problems in the sons, as well as the long-term health effects of the various treatments for CCA.

    TODAY

    Since 1971, the devastating effects of DES exposure discovered include:
    Structural damages in reproductive organs of DES sons and daughters;
    High risk pregnancies and miscarriage for DES daughters;
    Increased risk of clear cell cancer of the vagina and/or cervix in DES daughters;
    Increased risk for infertility in DES sons and daughters;
    Increased risk of breast cancer in DES mothers;
    Immune system impairment in some mothers and children exposed to DES.
    There are an estimated 10 million DES mothers and children in the United States today. Current statistics indicate that one in a thousand DES-exposed daughters will get CCA, the clear cell cancer originally linked to DES in 1971.
    To this day, none of the 267 pharmaceutical companies who produced and distributed DES has accepted any responsibility for the DES tragedy, and all continue to claim that DES causes no health problems. Eli Lilly, the largest manufacturer, has been a defendant in the majority of lawsuits brought by victims of DES-related cancer, infertility, and birth defects.

    Researchers are still uncovering frightening facts about the life-long effect of exposure to DES, including higher rates of breast cancer in DES mothers, reproductive abnormalities in daughters and sons, higher rates of ectopic pregnancy in daughters, and damage to the endocrine and immune systems. Effects on the third generation - DES grandchildren - are as yet unknown. To this day, no studies have been done on the long-term effects of DES exposure on agricultural workers, nor is the impact of exposure on pharmaceutical company employees known.

    The DES issue will not be finished until this entire generation of DES-exposed mothers, daughters, and sons is gone. Every physician and health care provider must be aware of what it means to be DES exposed and be educated to treat their patients in the best possible way.

    http://www.descancer.org/timeline.html

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    Lucas' Mommy :-) RamblinRose's Avatar
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    What is DES??

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    Lucas' Mommy :-) RamblinRose's Avatar
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    Oh, I just read the other think. Wow, very interesting! I don't know if anyone in my family ever had DES, but I know that my mom was told that her cervix (or uterus, not sure which now) was tilted. Noone has told me that though. And my mom also ended up having cancer in her uterus and had to have a hysterectomy. But that doesn't mean that it had anything to do with it, it's hard to tell...but that is very interesting.

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    Shattered Dreams! BeetleGirl's Avatar
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    Originally posted by RamblinRose
    What is DES??
    DES was a drug given to pregnant women approximately between 1941- 1961. Women were told it was a "miracle" drug that would reduce the risks of miscarriage. DES inhibits luteinizing hormone secretion by the pituitary therefore inhibiting testosterone secretion. Many years after the fact the FDA banned the drug with good reason.
    Here is a link to DES FAQs
    http://www.desaction.org/DES-FAQs.pdf

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    Registered User elaina's Avatar
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    Beetlegirl, thank you SO much for that information. That is the most I've known about DES. My Mother died of Ovarian Cancer in 1978, 12 years after she took DES to have me.

    I think joining this board is one of the smartest things I've done in a while. I'm learning a lot.

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    Shattered Dreams! BeetleGirl's Avatar
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    elaina,
    I am glad the links were helpful. I used to have alot more but deleted them from my favorites a while back.
    Though it will probably never be proven that there was a connection in our life time it really wouldn't surprise me if there was.
    Welcome to SoulCysters!
    I hope that you find the information and support that I have found.

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    Registered User elaina's Avatar
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    I'm getting genetic testing done next week. It was mainly because of my Son's illness, but the doctor is curious to find out what shows in my genetic make-up for PCOS. I will definitely be reporting my findings here.

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    SoulCyster #1 KatCarney's Avatar
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    I'm a DES Daughter, too, and have always wondered about how it affects PCOS...

    -k

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    Registered User elaina's Avatar
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    Question More PCOS thoughts

    I wonder how many of us are DES daughters? It would be interesting if a doctor would do a study on that and how it effects PCOS.

    Everyone of my female family and friends, now that I have told them what I have, has advised me that they think they have it too. I wonder if it's possible? I didn't think it was rare, but I was surprised that every single female (and we're talking about 20) I've spoken to feels that they have the same thing.

    Did any of you find out a multitude of female friends and family members also have PCOS?

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    Shattered Dreams! BeetleGirl's Avatar
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    elaina,
    It's amazing how many women have PCOS and don't realize that there is a name for the symptoms that they have grown to acknowledge as normal.
    Most of my family denies they have PCOS yet 2 of my aunts could be the poster women for the disease. They are both obese(300lb+ and one is only 5' tall) neither were able to have children to my knowledge(from what other family members have told me), one suffers from adult acne while the other has a beard, they both have high cholesterol and all the other goodies that PCOS has to offer yet they deny that they have it...I think it's because I don't have a doctorate. My mother shows signs even though she is slim but she is so stubborn that there is no way she would ever get tested and except for one other sister on my mothers side that has so many other things wrong with her that she can't be bothered to find out if she does or doesn't have it there's really no one else to test.
    I have read in numerous reports and studies that it is hereditary.

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    Registered User elaina's Avatar
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    I've told all of them to go and get tested, and they are. If all of these women get tested, I bet those percentages would change in a hurry. It's probably more like 40%-50% of women have this rather than the 5%-10% that they estimate.

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