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 started growing breasts at age 7 or 8 and was not a bit overweight. I started my period at age 11. I had reached my full height of 5' 8" by age 12 and was fully matured with a womanly body. I also had severe growing pains as a youth.

    I don't think the DES has caused all fibromyalgia cases, I just think it has added many cases to it . I think it makes it easier for us to get it and other autoimmune diseases. I hope that makes sense. LOL! It is just so strange that fibro began being diagnosed at such large numbers in the generation of this drug. I do think it has a correlation. I am a member of a group of DES daughters and get their emails everyday in daily digest. They sound so much like many of us. I hope one day we will know more about the drug.
  2. petsrme

    petsrme Member

    I started growing breasts at age 7 or 8 and was not a bit overweight. I started my period at age 11. I had reached my full height of 5' 8" by age 12 and was fully matured with a womanly body. I also had severe growing pains as a youth.

    I don't think the DES has caused all fibromyalgia cases, I just think it has added many cases to it . I think it makes it easier for us to get it and other autoimmune diseases. I hope that makes sense. LOL! It is just so strange that fibro began being diagnosed at such large numbers in the generation of this drug. I do think it has a correlation. I am a member of a group of DES daughters and get their emails everyday in daily digest. They sound so much like many of us. I hope one day we will know more about the drug.
  3. petsrme

    petsrme Member

    Mable they do think that this can cause problems for the woman who took it. I hope that is not what caused your difficult last pregnancies. The nuts should have made sure you were pregnant instead of giving you drugs. Have your children shown any signs or fibro or CFS or arthritis at an early age?

    Have you did any karokeeing lately. I can't spell it LOL!I had never done it in my life, even when I have had a few drinks. It would take a million I think. LOL! Anyway at my daughters birthday party we had the karokee machine out and several of her friends and our family were there. We all took turns singing. I did "She's A Superfreak" by rick james. I can't sing a lick so I am sure all of their ears were ringing. It was so much fun though and liberating.
  4. petsrme

    petsrme Member

    Mable they do think that this can cause problems for the woman who took it. I hope that is not what caused your difficult last pregnancies. The nuts should have made sure you were pregnant instead of giving you drugs. Have your children shown any signs or fibro or CFS or arthritis at an early age?

    Have you did any karokeeing lately. I can't spell it LOL!I had never done it in my life, even when I have had a few drinks. It would take a million I think. LOL! Anyway at my daughters birthday party we had the karokee machine out and several of her friends and our family were there. We all took turns singing. I did "She's A Superfreak" by rick james. I can't sing a lick so I am sure all of their ears were ringing. It was so much fun though and liberating.
  5. samhain1641

    samhain1641 New Member

    My grandmother had this shot when she was pregnant at some point and cancer auto immune disorder and so on have run their course through my family however fibromyalgia has been in the family farther back than my great grandmother who was completely disabled and unable to walk because of it so the des is not the link to my diagnosis of fm... but it was with the other problems i have had....BAD STUFF

    sam
  6. samhain1641

    samhain1641 New Member

    My grandmother had this shot when she was pregnant at some point and cancer auto immune disorder and so on have run their course through my family however fibromyalgia has been in the family farther back than my great grandmother who was completely disabled and unable to walk because of it so the des is not the link to my diagnosis of fm... but it was with the other problems i have had....BAD STUFF

    sam
  7. Sue50

    Sue50 New Member

    My mom took the des for 7 months when pregnant with me. I had 2 miscarriages and a mole pregnancy before I finally had a successful pregnancy. I had dysplasia and had the cells frozen, that was 20 yrs ago, my DR told me the older I get the less chance of any cancer but I guess that isn't true anymore? wish I could sit at the computer to read all the info but my neck and shoulders get very painful, can anyone condense the info to the most important things I need to know? Thanks
  8. Sue50

    Sue50 New Member

    My mom took the des for 7 months when pregnant with me. I had 2 miscarriages and a mole pregnancy before I finally had a successful pregnancy. I had dysplasia and had the cells frozen, that was 20 yrs ago, my DR told me the older I get the less chance of any cancer but I guess that isn't true anymore? wish I could sit at the computer to read all the info but my neck and shoulders get very painful, can anyone condense the info to the most important things I need to know? Thanks
  9. CarolK

    CarolK New Member

    I plan on looking into this much more! This thread about DES is too important to let slide.

    blessings to all.... CarolK
  10. CarolK

    CarolK New Member

    I plan on looking into this much more! This thread about DES is too important to let slide.

    blessings to all.... CarolK
  11. Ancient1

    Ancient1 New Member

    I am also a DES daughter! It also affected both of my brothers, each a year younger than myself, she was still getting shots during subsequent pregnancies, whose wifes suffered with infertitility for a decade each. Even though all tests on them checked out normal.

    My Mother would have a hysterectomy before she was 30. Her Mother died of cervical cancer by age 54.I wonder now if she also took DES, knowing my Mother was her only child and a miracle birth for her.

    I had 6 miscarriages that I was aware of and very difficult pregnancies and deliveries. I have 5 children I gave birth too. A miracle for sure! I had no idea I needed to be aware of problems in their generation and their children's generation, as well. How unfortunate! I feel sad.

    My Mom bleed the entire nine months like a full period, while she carried me and was given the DES shot the entire time. Twins were suspected. When I wrote her doctor about it after several miscarriages of my own, he was very uncooperative and defensive, offering no help what so ever to my medical team.
  12. Ancient1

    Ancient1 New Member

    I am also a DES daughter! It also affected both of my brothers, each a year younger than myself, she was still getting shots during subsequent pregnancies, whose wifes suffered with infertitility for a decade each. Even though all tests on them checked out normal.

    My Mother would have a hysterectomy before she was 30. Her Mother died of cervical cancer by age 54.I wonder now if she also took DES, knowing my Mother was her only child and a miracle birth for her.

    I had 6 miscarriages that I was aware of and very difficult pregnancies and deliveries. I have 5 children I gave birth too. A miracle for sure! I had no idea I needed to be aware of problems in their generation and their children's generation, as well. How unfortunate! I feel sad.

    My Mom bleed the entire nine months like a full period, while she carried me and was given the DES shot the entire time. Twins were suspected. When I wrote her doctor about it after several miscarriages of my own, he was very uncooperative and defensive, offering no help what so ever to my medical team.
  13. petsrme

    petsrme Member

    bumping for person who asked about DES.
  14. Deev

    Deev Member

    I am a DES daughter and it is highly likely that I have MS.....will know in a few weeks, after more testing.

    I was wondering how many DES daughters have Prolapsed Pelvic Organs?
  15. Abdulrahman

    Abdulrahman Member

    Hi Petsrme,

    Excellent reporting. Thank you for sharing with the healthboard this very critical data on DES impact on women and children. All women on this board need to investigate this to measure its impact on their health and childrens health.

    For all such women and children exposed to this dangerous "medicine", sorry i mean profitable drug, it is very important for them to undertake a permanent diet program that includes strong anti-cancerous foods and plant nutrients to minimize the possibility of cancer. There are many books on Amazon.com on the subject of Natural Cancer Prevention and Natural Cancer Treatment.

    I have my own natural cancer elimination program as a PDF document its called:
    Natural Cancer Cell Elimination by Safe Plant-Extract Chemotherapy
    I don't think the moderator wants off subject material to be posted.

    Abdulrahman
  16. Tara-CT

    Tara-CT Member

    I'm a DES daughter! I knew as early as the 1970's and was part of the original DESaction research from 1985-1992 (my first menstrual period was at 16 in 1985). My mother lost three pregnancies prior to me and took DES to prevent a my miscarriage in 1968-1969 from the fourth month to end. My brother, born in 1970, is a DES son.

    My mother developed thyroid issues in her 40's. In her late 40's she had breast cancer in both breasts; she's 75 and still taking worldwide tours and cruises now!

    My own health, however, isn't as good. In 1971, I had surgery to re-open my urethra. My puberty was late (my period started just before I turned 17 and was never regular), and menopause started over a decade early. I had the tell-tale "hooded cervix" and T-shaped uterus, which is one way women who are unsure about DES exposure can check. I also had EXTREMELY painful periods and very heavy blood flow - fully saturating an "overnight pad" within 3 hours -- that ran 3-4 days of a six-day period. My periods sometimes skipped a month or two or showed up twice in one month. I also knew EXACTLY when I ovulated because I would feel an intensely painful pinch at the ovary that lasted for about 4 hours and an ache that lasted about 2 days. All of these are very common with DES daughters and a good number (but lower percentage) of 3rd and 4th generation DES daughters.

    By the time I was 20, I had my first abnormal pap. I wasn't even sexually active yet! I've had many cases of pre-cancerous abnormal cells in both my vagina, cervix and uterus. Two or three biopsies came back as cancer, but after they removed the tiny growth, they found no cancer spread beyond that point. Another way to identify a DES-daughter is that there is a place about halfway to 2/3 inside the vagina where there is a change from vaginal cells to cervical/uterine cells. This is the point where many teenage/early-20-vaginal cancers related to DES occur. In normal women, this place of change is normally at the cervix/uterus by the time one reaches puberty. In DES daughters, that point only reaches the cervix - if ever - by the time you are in their 30's.

    I had my first mammography when I was 30 because of DES and my mom’s history. I had such an abnormal baseline that they rushed me to breast surgeon for a follow ultrasound and biopsy. It turned out to be calcium deposits and just "abnormality". I went every six months for the first 10 years and now every year. Fortunately, I never developed breast cancer to date (currently 47).

    Like many DES-daughters, I had difficulty getting pregnant. My only pregnancy nearly took my life. I found out I was pregnant at 35 when I went to the emergency room because I had my third period in three weeks. During the pregnancy, I dropped 30 pounds in 2 months -- no nausea or morning sickness, but because I would NOT STOP BLEEDING. In addition to the heavy period like flow during the pregnancy, I hemorrhaged three times during the pregnancy. To describe it accurately, it was like someone flushed the equivalent of a toilet bowl of blood out of my vagina suddenly. Unfortunately, the pregnancy did not survive. During one of my ultrasounds, they found no heartbeat and confirmed that we had lost that child. Unlike my mother who carried a dead child inside her until her body decided to finally give birth, I did not want to put myself through that, so I opted for a D&C. During the D&C, I hemorrhaged so badly that the OB/GYN doing the procedure needed to call in another OB/GYN to work the ultrasound and guide her where to go because there was so much blood pouring out of me she was blind, according to what she told us afterward.. Later on, when I had mended emotionally and physically, I was told that it would be "LIFE-THREATENING" if I attempted to get pregnant again.

    A few years later, around the age of 38-39, I started to have severe pain in my ovaries. This was NOT the typical ovulation pain. This was even worse than my period pain. I actually passed out cold more than once due to the intensity of this. I developed recurring cysts on my ovaries, blooming monthly as my aging ovaries tried to release an egg. The cysts would swell from 2cm to as large as 2 inches (they had the MRI to prove it) until they popped. According to my blood-work, I was in peri-menopause (thanks to DES) and my ovaries were pumping out eggs in a last ditch attempt to get pregnant. At this point, I was clearly not going to get pregnant, and my vagina, cervix and uterus were riddled with pre-cancerous cells. My surgeon wanted to remove the cysts; I wanted to remove everything: ovaries, tubes, uterus, cervix and half vagina. As a DES-daughter, I was fully aware of my risks of cancers. If I could not have kids, I saw no reason to keep the plumbing. I had a full hysterectomy at 42.

    Please note, that even without a cervix, I continue to get pap smears at the end of the "nub.”. A woman without a cervix can STILL get cancer growths. So far I've been fortunately normal since. And I do NOT miss my agonizing, blood-heavy periods at all!!!

    I did use HRT (hormone replacement therapy) after the hysterectomy. I was quite hesitant knowing that HRT is a very bad for DES-daughters, but, as my doctor explained, crashing into full menopause overnight will wreak havoc on my body. So we worked out a schedule where I used steadily decreasing doses of HRT to ease my body quickly from peri-menopause to full-menopause within three years. Hot flashes and night sweats were minimal for me.

    Shortly after my hysterectomy, I started having VERY bad bladder pain. After several tests including shoving a camera up my urethra into my bladder, I was diagnosed with IC/PBS (interstitial cystitis/painful bladder syndrome. I chalked it up to "trauma of the bladder" as the cause, as they literally peel the uterus off the bladder during a hysterectomy.

    Nearly four years ago, I was diagnosed with plantar fascilitis, polymyalgia rheumatica, fibromyalgia (and I bet you wondered when I would get around to that) and vasculitis. One of my specialists pointed out that IC/PBS, polymyalgia and fibromyalgia are all related. But it wasn't until today that I EVER connected the autoimmune issues with DES. Out of curiosity, I looked it up and found several websites linking the two. Fortunately, I see my doctor in two days and will bring this up. Unfortunately, I dropped off the DES research group when I moved out of New York City area back in 1992. So I have no connections there. My OB/GYN is knowledgeable about how DES affects her specialty, but all of the doctors I see for my condition never once mentioned DES... but then again, neither did I.
  17. SulB

    SulB Member

    You write that, "I had my first mammography when I was 30 because of DES and my mom’s history. []. I went every six months for the first 10 years and now every year. Fortunately, I never developed breast cancer to date (currently 47)." You too said that you are "fully aware of my risks of cancers."

    As a DES daughter your body has been exposed to excessive estrogen with a higher susceptibility to estrogenic events.

    Medical x-rays have estrogenic effects, are cumulative and are carcinogenic even at the lowest possible dose (see 'The Mammogram Myth' by Rolf Hefti). Therefore, it does not seem like a good idea to have had, and continue to have, lots of mammograms. Also because you've been "riddled with pre-cancerous cells," have had HRT (which is largely estrogen therapy and known to be carcinogenic), and mammography doesn't necessarily result in breast cancer but can show up as another form of cancer at a different area in your body.