You’ve Heard of Thalidomide Babies, what about DES Babies?
February 21st, 2012. By AbiK
It’s a startling reality that DES Mothers, DES Daughters and DES Sons live with—that not many people know about or have heard about the pregnancy drug DES—diethylstilbestrol—or the harmful effects its had on both mothers who took the drug, and children who were exposed to the drug in utero.
DES was prescribed during the 1940’s to the 1970’s to expectant mothers who were at risk for miscarriage or pre-term delivery. The drug, however, was found to potentially cause clear cell adenocarcinoma (CCA), a rare form of vaginal and cervical cancer; reproductive tract structural changes such as a T-shaped uterus; complications in pregnancy such as ectopic (tubal) pregnancy and pre-term delivery; and infertility.
DES finally had its FDA approval revoked in 2000 (it had been recommended that doctors not prescibe it in 1971)—but not until potentially millions of mothers and children had been negatively affected by it. And those children are now between forty and seventy years of age or so—some of whom have lived through infertility or miscarriages of their own with out knowing that the reason could be connected to exposure to DES.
And that begs the question: why do so few people know about DES and the damage its caused? DES seems to be in the shadows of thalidomide—so much so that it’s been referred to as the ‘silent thalidomide’ in the press.
There are some possible reasons why, of course.
First, thalidomide was never approved for use in the US. DES was approved which perhaps made it appear less pernicious—after all, ‘my doctor prescribed it’.
Second, thalidomide babies could not help but evoke the collective sympathy and outrage of all who had seen a picture of an innocent newborn with severe birth defects such as missing or shortened arms or other severe disfigurement. There are no alarming pictures of DES victims—only faces; and those faces look just like you or me.
And finally, thalidomide, by its horrific nature, wove its way into popular culture—probably the most familiar evidence of this for many is the Billy Joel lyric from “We Didn’t Start the Fire”.
Diethylstilbestrol (DES), however, has potentially affected many more women in the US—and their children and perhaps their children’s children (aptly called ‘DES Third Generation’)—than thalidomide and is in some ways a much more heinous drug in that DES is the one that slipped through the proverbial cracks—the one that the FDA didn’t put the brakes on—soon enough.
Perhaps you now know about DES. But more importantly, do you know if you were on DES or exposed to it?
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I took one day of DES when I was pregnant and about 2 months along in 1960 and had started to have some bleeding. Thank God it was only one or two days. However, my oldest daughter born of that pregnancy, has at one time had to have a pre-cancerous growth removed many years ago. She is now 51. Could that possibly have been related to the DES from so many years ago? She was in late '20's when she had the growth removed. Now, she herself has a 21-yr. old daughter. Could my own daughter still have some repercussions (she lives in another state and probably doesn't tell "Mom" every little female problem because she worries about my health nowadays. ) Should I contact her and ask if she has had other female problems?
Hi Barbara, Thank you for sharing about your experience with DES. I cannot say whether taking DES in your situation was or was not linked in any way to your daughter having a pre-cancerous growth–that would need to be explored by medical professionals and/or the researchers who've studied DES. On a personal note, you may want to at least let your daughter know that you had been on DES if you haven't already–even though it was for a very brief time–so she is aware, and so that she is also aware of your concerns. And, it goes without saying that should you feel any injury has been caused by DES, you can submit a complaint for a DES attorney to review here: https://www.lawyersandsettlements.com/submit_form…
My brother was born blind in one eye. My sister had serious cancer, uterous removed at age 20. I am the youngest and was born with significant underbite, not enough room for teeth and deep roots for nerves (3-4 root canals). Largest tonsils doctor ever removed too.
My mother suffered two miscarriages and was prescribed DES in 1954 when she was pregnant with me, a DES son. Less than 5 years after the birth of my son, I was diagnosed clinically sterile. I am transgendered living all my life a female born in a male body. It is estimated that one in three male DES son's are born intersexed or have transgender issues. Yet we cannot get enough funding to study this phenomenon. I'm a moderator on the World's largest Transgender support board and the number of DES son's and daughters appearing are staggering.
Just to add to Bob's comment about gender issues among DES sons. The reproductive organs develop during the first trimester of pregnancy, but most of the brain's sexually dimorphic development takes place during the second and third trimester of pregnancy, which just so happens to be the time DES was typically prescribed to the DES mothers.
A not widely appreciated fact is that male development in the unborn child isn't directly driven by genes, but is instead driven by hormones produced in the testicles. Interfere with the production of those hormones, and any development that takes place during the time the hormones aren't there goes down the female pathway instead of the male one (eg. see the wikipedia entries for CAIS or Swyer's Syndrome).
Everyone looking at DES seems to have focused on its estrogenic properties, but I've discovered that it's also an extremely effective chemical castration agent, and was for many years regarded as the gold standard for treating men with advanced prostate cancer. Just 3 mg per day of it produces effects (as far as male hormone production is concerned) considered to be medically identical to surgical removal of the testicles, an interesting fact when you bear in mind that the starting dose for mothers given it as a treatment for miscarriage was 5mg per day! Perhaps you can see where this is leading.
Throughout the time their brain was undergoing its sexually dimorphic development, a typical DES son was being exposed to more than enough DES to completely shut down his testicles and their production of male hormones. No one seems to have appreciated the importance of that fact. As I understand it, the consequences of losing male hormone production during the crucial time the brain is developing is that the brain will develop as female instead of male, and as an adult that person will have what is literally the brain of a woman inside a male body. It's no surprise that many of these people feel like a woman in a man's body; the surprising thing is that not all of them do!
I understand these arguments. Can’t disagree as I was exposed in the manner described and am transgender. Could you provide me with research article titles and journals that address this issue? Thanks.
Hello I understand the point you are going for completely as my mother was given 10 the 15mgs during my entire prential life. When I was born people who saw me would say what a beautiful little girl my birth certificate said male a point the doctor said wasn’t a sure thing. I tried living a male life for over 20 years making a big mess of it. I am now living as a female and fit so well that I regret the 20 yrs I messed up as a intersex male. I fit like a puzzle piece and my husband can’t believe that I was ever anything male. Please help us give us the federal the medical support we desperately need.
I have some anomolies with my uterus. My mother died of GBM (glioblastoma malforme 4). I have no idea if she took this drug while preg with me but COULD this cause these issues?
My mother took the des drug while pregnant with me, I have had to have a couple surgeries to remove the precancerous cells my final surgery was a hysterectomy.( I had Endometriosis). My daughter had one normal pregnancy with no complications. Her 2nd pregnancy ended at 12 weeks. A year later she had an ectopic which ruptured her left tube which had to be removed. She ended up pregnant right after.. she carried this baby full term and the baby is healthy.. reading about the drug des and knowing what the effects are, explains the reasons why my daughter lost 2 babies.
I am a 46 yr old DES daughter. My mother was prescribed large doses due to 6 previous miscarriages.I was told by my Mother that the drs told her that I’d never get my period, have children, and to expect health complications as I aged. I beat the odds with the 1st two, but as I aged the health complications did happen. I’ve had cervical cancer&endometriosis in my 20’s. Have suffered from major depressive disorder& anxiety also since my 20’s,I am in early onset menopause,I I have PMDD, have ADHD inattentive type and am LD in math, have a lump in my breast a mammogram says isn’t cancerous as of now, and to many other ailments to list.I’m exhausted and in pain every day and NO drs know what to do with, or for me. Both of my children exhibit many of the third generation symptoms as well as my younger sister. What can be done?? We suffer greatly from DES exposure, and although the drs know about this,they don’t acknowledge it as important?
I’m a 45 year old DES son in Australia. I am no longer in contact with my mother who took DES whilst pregnant with me in the UK. I was born with Amblyopia (lazy eye) Hip dysplasia, testicle cysts, heart murmour, preaxial polydactyly (extra digits) and a large prostate. I suffer from major depressive and anxiety disorders; I am on the spectrum, lost somewhere between acronyms, oh, and I have the genitals of a male but my brain sometimes thinks otherwise. Having recently made the connections, I am now looking for any forums or networks here in Australia.
“I had to go crazy to prove I wasn’t crazy…”
My brother, 52 now and cousin 53 now are both victims of this drug! They both have Hershburgers syndrome! Anyone else experience this as a result?
I meant to say Asperger’s syndrome
I have had pretty much all of symptoms mentioned. The really big one that has totally destroyed me and family is the severe depression. Started very young but didn’t come full out until the birth of first child. I was 20 and now 63. It is and has been my TOUGHEST BATTLE even more than the cancer, endometriosis, total hysterectomy and oophorectomy at 33; not to mention menopause at 33 along with severe panic disorder, bipolar and 3 types of seizure disoder. Can any one relate?
My mom took DES while pregnant with me. At the age of 41 I had to have a hysterectomy due to very large reoccurring fibroid tumors. Have always thought it might have been from the DES. Any thoughts?
Hello. In 2008, after much heavy bleeding and anemia, I had a full abdominal hysterectomy, but I kept my ovaries. The fibroid tumor was not cancerous, but it grew inside my uterus to the weight of 25 pounds. Just last month, I had an oophorectomy. On my left ovary was a cancerous granulosa cell tumor. I had taken numerous ca125 tests which all came back negative. So much for that test. I was told the cancer was contained and did not spread, but next week I am going to Roswell Park to see an oncologist. I am a DES daughter. God bless.
My mom took Des resulting in these classic
symptoms or me: severe bleeding with horrific cramps, enemia, numerous miscarriges leading finally to laparoscopis confirmimg endometriosis. I have 4 sisters and each if us has has suffered a number of the above mentioned symptoms.
Reading these comments I realize that DES has caused my medical problems all along. I had periods that flowed right my clothes with golf ball size clots. My pregnancies all ended in miscarriage. My depression started with my first period and is still with me even though I take medication. I had a partial hysterectomy in my thirties. My mother took DES the last three months of her pregnancy with me every day. I am 69 years old
I was a DES son. I’m 46 now. I was born with severe hypospadias. Enough that pre natal scans indicated I was a girl. I wasn’t. As a result I was pretty much rejected by my parents and although I never got on with my father, my mother did her duty, kind of. I had 2 surgeries and hormone treatment.
I’ve suffered with ADHD, (and other ASD problems), depression and gender dysphoria, and an autoimmune disease (celiac), rounded shoulders slightly stooped, and last year I came out as transgender to my wife. Who has been very supportive and we have 2 great kids.
This has been a lifelong struggle. What’s worse is that my mom only told me about the DES treatment last year. I left home at 19 and moved to Japan 17 years ago. Finally getting back in contact.
Our world’s, each of us on here, are indescribably different to what those around us can possibly imagine.
Mika.
So many effected by DES, my heart goes out to all of you. For years I had no answers until 2015 about my birth defects, I am a thalidomide survivor. My mother never would talk about it, always said “none of my business!” Thank god for the Shriners Hosp.! At least I know, lies hurt me MORE than the defects!!!
My mother took this medication to prevent miscarrying two pregnancy’s before becoming pregnant with me. Sadly the first baby was lost just after the first tri-mestry and the following sister was lost at 6.5 months. Shortly after these she became pregnant with me. I was never told whether or not she was taking medication during her time carrying me to full time. She passed away just over 2 years ago from Lung Cancer. I question assuming she didn’t take this medication is it possible that her body retained or was affected from the two almost continuous pregnancies directly into her third carrying me? I suffered from the inability to begin my menstrual cycle and didn’t until I was 16 years old only having rate cycles with terrible cramping and excessive bleeding with clots. I married youngdot an older man with a child and wanted a child myself with him so I never used protection of any type and it took us 5 years to achieve pregnancy. During this time I learned that I had ovarian cysts and endometriosis. At the age of 26 after multiple female surgeries a surgeon performed a full hysterectomy & oophorectomy. I have been ill with multiple health problems most of my life. From the age of 14 I began having severe migraine & tension headaches, from 23 years of age Myofacial Pain Syndrome, Chronic Severe Fibromyalgia, Myalgic Enchephamyalgia, Osteopenia as early as 31, Ruptured and/or bulging spinal & cervical disc (6 total). I have depression, anxiety and at 44 was diagnosed with early Frontal Lobe Atrophy. I have RA, Osteoarthritis, Pelvic and Rectal pain from trigger points and myofacial pain, burning mouth syndrome, Sjorgens and much more as my ailments are everywhere. Could this be because of DES? I truly would appreciate an honest opinion about it. My younger sister was born within 12 months of myself as a Hydrochyphalic (sic) baby, the next sister has MS as well as many other issues and our mother definitely was on medication to prevent the loss of pregnancy. I was told this medication was banned shortly after the birth in 1964. I have one son, 2 grandsons and 2 granddaughters. My family members (sistars are nearly all overwhelmed with medical problems. Most of us have had reproductive organ problems, early hysterectomies and vaginal/rectal issues as well as the depression and anxiety. Thank you for your time, all/any response are appreciated.
I am a DES daughter too. I am now 65 years old. I live in Canada. Your story and the ones I had read on this post make me cry. I have had huge medical issues all my life; beginning with losing three babies at the beginning of my journey, and so much more similar to your story. I still have health issues to this day, (as I have read about in your post). My son was also born with hypospadias. When I would talk to my doctors in Canada about my DES exposure, few of them knew anything about it. I felt like I was a teaching tool to these doctors, and when I asked my family physician at the time if he had any other patients who were DES exposed, he said that I was the only one in his practice that he knew of. I was actually the patient to bring this knowledge to his attention. (Circa 1979). I used to belong to DES ACTION CANADA through the 1980’s-1990’s where I would pay a fee to subscribe to their newsletter. I still have the newsletters in my filing cabinet. I understand that litigation has happened in the United States (class action suit), against the Eli Lily drug company. This is all I know because then I just tried to carry on with life. I didn’t follow what happened. What I did learn was that Canada has never had a class action suit against the drug company. One of the problems is that the litigants have to have the original Doctors’ records to prove that the drug was administered. Those records were long gone from my mother’s doctor as I was born in 1953. I had a sad moment with my mother, when DES exposure came to light, when she said to me that she felt so guilty. I told her that it wasn’t her fault and it also wasn’t her Doctor’s fault; he just thought that he was giving a drug that was deemed to be good. This story, for all of us, is so sad; and Doctors know better now. (I hope). The saddest thing of all is the history of this drug (synthetic hormone) being given to women without testing. We are living the life long story; and yes, we are similar to Thalidimide babies in that the issues happened within the same decades. Their tragedies were visible, and they live with them to this day. Our tragedies were not visible, but we live with them to this day as well. I am always so sorry that people, (my friends, family and doctors included), don’t get it! I try to explain and sometimes I get glazed over eyes and then we move on the next subject.
Glad to respond
I have been told that both my mother and my aunt took DES in the 1960s as an abortifacient. (i.e. to CAUSE a miscarriage after being unintentionally pregnant.) Have you ever heard of DES being used for this purpose?
I am a DES or Thalydomide baby, now age 67. Unlike other DES babies, I had no issues with cervical or ovarian cancer, however I was born with three congenital heart defects (upper chamber of heart damaged (PSVT); hole in my heart (Patent Foramen Ovale) ; and a Left Circumflex Anomalous Artery (LCA). There is no family history of heart disease on either side of my parents’ families and non of my siblings have heart disease. I am a non-smoker, non-diabetic, fitness enthusiast with healthy eating habits, etc. I wish that the research into DES babies & Thalidomide babies had also included congenital heart issues. I was born with a heart murmur, experienced heart disease symptoms (severe migraines; lightheadedness; passing out after running fast & stopping quickly; chest pain; irregular heart beats; extremely low blood pressure (hypotension) my whole life, ignored by numerous physicians, which worsened at age 50. That’s when I, through visits to highly recommended clinics all over the country and firing four cardiologists, was finally diagnosed with these heart congenital defects. My quality of life has suffered greatly in the last 18 years, and I would love to know if there are any other DES/Thalydomide babies out there who suffered congenital heart issues, other than cancer, miscarriages, pre-mature babies & horrible outward congenital deformities? My mother took a vaccine (unsure which one as she has since passed) in early 1953… I was born in December of 1953.
Looking forward to hearing back! Thanks..
Hi, my mother also took DES under instructions from a doctor here in New Zealand due to many prior miscarriages. I was born in 1965. There were no pictures of my first three-months of life. I was not breastfed as my mother was unable to do this. I had major health problems and ended up with an allergy to penicillins due to many infections. I was a very withdrawn child and have always felt anxious and depressed. I still have big problems with anxiety. I had terrible heavy periods due to fibroids and endometriosis which inevitably ended in a hysterectomy. DES definitely made me different to others I find it easier to be on my own.
Kia kaha fellow sufferers (this means be strong).