DES – The Drug to Prevent Miscarriage Ruins Lives of Millions

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Let’s rewind time. We’re in 1970. My mum, like millions of other women, puts all her trust and last hopes of carrying a successful pregnancy in the hands of health professionals. She accepts to take a drug recommended and prescribed in good faith by her doctor without knowing that years later it would have devastating consequences not only on her health but the health of her daughter and possibly her grand-children. She takes Diethylstilbestrol (or DES in short), the first synthetic man made female sex hormone (oestrogen) widely prescribed for public use in the mistaken belief that it would prevent miscarriage and loss.

Now let’s fast forward. We’re in 2001 three decades after my mum took DES. I’m in a hospital ward anxiously waiting for the results of a scan. I’m pregnant. “We’re so sorry, but you know 1 out of 5 pregnancies end in miscarriage. You should try again” I’m told. My head is spinning. What did my Mum said again? DES, yes DES, I remember now. She mentioned when I was just a teenage girl that research had confirmed that the drug taken throughout her pregnancy to prevent miscarriage was responsible for all sorts of dreadful health issues including a rare form of vaginal cancer, infertility and high risks pregnancies. What if this was responsible for the loss of my baby, I ask. “DES? What is DES? Never heard of it!” replies the consultant on duty that day. ”If you keep miscarrying, we’ll investigate further” he adds.

I don’t listen and seek help and advice from an organization founded by a mother who had been prescribed this drug and advocates for the many families affected by DES. A Professor, expert in fertility treatment, confirms a congenital uterine malformation typical of DES exposure and confirms that I’m a DES daughter, one amongst millions of other women whose mothers took Diethylstilbestrol during pregnancy.

If you were born or pregnant in the US between 1938 and 1971, and until the mid-’80s in some European countries, you may have been exposed to DES too and you may suffer from the consequences of this drug without even knowing it. Diethylstilbestrol has put the mothers prescribed the drug, their daughters and sons exposed in utero, and potentially their grandchildren due to the trans-generational effects of this synthetic hormone, at risk for serious health problems including but not limited to: structural damages in reproductive organs, high risk pregnancies and miscarriage, cancer, infertility and possible immune system impairment. Many other suspected effects are still awaiting further research but funding is critically missing.

Often referred to as the “Silent Thalidomide” by the media, diethylstilbestrol is considered as the world’s first drug scandal. Despite evidence of its ineffectiveness and danger, it continued to be prescribed to pregnant women beyond 1971 when the first link between DES and a rare form of vaginal cancer (clear cell adenocarcinoma) was formally established in Boston, Massachusetts.

Even though this drug was given to pregnant women decades ago, it affects and continues to affect millions of families today and possibly for many years to come. Yet, diethylstilbestrol has been and still is a well-kept secret, a taboo subject not only in families but within the medical community too.

No drug manufacturers, health authorities, nor governments have ever taken responsibility for the long term health side effects of this drug.

Don’t Pharmaceutical companies have a responsibility to their consumers to provide a product that is safe?

Four sisters recently filed a lawsuit against drug manufacturer Eli Lilly. They feel that their breast cancer was a direct result of Eli Lilly’s negligence. Eli Lilly has never accepted responsibility nor apologized for the DES tragedy, even though the company has paid millions in out-of-court settlements and verdicts to DES Daughters and Sons who suffered injuries from their exposure. The Melnick sisters reached a settlement with the drug company a few weeks ago, but Eli Lilly has not accepted any responsibility. Outraged by Eli Lilly’s failure to fess up on DES, Patricia Royall, a plaintiff in one of the 72 pending DES breast cancer lawsuits in Boston federal court and the District of Columbia, is now calling on the general public to sign a petition urging the drug manufacturer to apologize for the DES tragedy. From all corners of the globe, Australia to France, the UK to the Netherlands, Ireland to the USA, DES victims are crying out for justice.

Diethylstilbestrol is a world drug disaster yet very few people know about its tragic health consequences or have even heard about it. Public health awareness campaigns are vital to reaching out to the millions of people who have been exposed to this harmful drug. People who are not aware of their exposure to DES are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result. It is equally important to educate the next generations of health professionals who have never heard of DES so they can provide adequate care to DES victims for years to come.

DES DaughterDES is not something of the past. People who have been exposed to this drug years ago are battling with health issues and fighting for their lives as I’m writing this blog post. Who knows what health problems the grandchildren of the mothers who were prescribed this drug will have to deal with as they grow up. I want my daughters to receive adequate medical care and monitoring if they ever have to suffer the consequences of this drug. This is why together with my husband we support the great work done by the very few International DES Action Groups who are providing valuable information and are advocating for the DES victims.

If you’re concerned that you may have been exposed to DES, please don’t let doctors dismiss your concerns. Contact your local DES Action Group for professional advice and guidance.  Connect with me and other DES daughters via my blog: DES Daughter Network and my website: Journal of a DES Daughter. You have the right to know.

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This article was published previously on Hormones Matter in February 2013. 

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39 Comments

  1. I was put up for adoption, I have had had health issues my whole life. I started my period at 8 year’s old and had severe endometriosis. My first tubal pregnancy I died on the table from loss of blood. Needless to say they were able to save me. I have had huge tumors the first one crushed my uterus and the second one was around my overiy. So I wound up with a complete historectomey by the age of 26. I am now 52. Now I have a tumor in the center of my brain and was born with empty sella syndrome that I didn’t know about until the headaches came. Also I was just diagnosed with cancer. I happened to stumble on this about DES. I was looking up how cancer was treated in woman in 1964. That would have been the year my birth mother was pregnant with me and while she was pregnant with me she had cervical cancer.

  2. Hi my name is Brittany I’m 33 years out…I have went thru years years not knowing what was wring with me..until my mom mention a drug called D.E.S that my grandma took in the 1940s and my mother out of five kids was only one that made it..she had still born misscariages..I had one miracle baby who is 12..I’ve had four misscariages..I am been trying to reach out not sure if I’m a des daughter but makes so much since me and my fiance been trying finally found out I have endromitriosis and I have a biocortal uterys that can be removed I have so much problems my grandmother tryed to get a lawyer she was fighting cancer was too late but I like to reach out to those like me that have problems I have problems thought I was not normal for along time just want know

  3. I now believe I am a DES daughter. I am 57 yrs old and have had health issues my entire life. I started having periods when I was 11 yrs and 3 months old.

    In my 20ties, I wondered what was wrong with me as I was tired all the time. I barely even dated as by the time I got dressed, I was too tired to go out. In my 20ties I lost about 7 pregnancies. I then gave birth to s son in 1988 when I was 29, He became very sick at about 5 months old and almost died. He was sick most of that year.His dad died in a plane crash in 1990 when he was only 2.

    In my mid 30ties, I remarried, I really wanted more children so my son would have siblings, I had 5 etopic pregnancies that all ended in emergency surgery, in 2 I almost bled out, and I had multiple miscarriages.

    In 1999, when I was in my late 30ties, I did IVF, and they implanted 3 eggs, all of them took and I was ecstatic to be pregnant with triplets. However, it was short lived, At about 4 months into the pregnancy, I miscarried 2 of the babies. I was a wreck. However, the doctors told me I had a good chance of carry the third baby to full term.

    They put me in the hospital for almost four months where they had me lay literally upside down the entire time without getting out of bed. They tied the cervix shut and feed me through my heart. My precious Abbie Rose was born almost 4 months later but died in my arms the next day.

    My husband was so devastated that he actually told my son (12 yrs old from the previous marriage where my husband had died), that it should have been him that died instead of his daughter. He left soon after Abbie died and said he wanted a woman who could have children. ) – :

    I am now 57, I have hemorrhaged for 10 yrs straight, the amount of blood and blood clots have been unbelievable. Sometime I couldn’t even get off the toilet or would lay in the shower and cry passing clots the size of lemons.

    I passed out so many times from blood loss. Once I passed out and fell down a flight f stairs and broke my ankle, another time I passed out and fell on a rock,shattering a dozen teeth. I have spent a fortune on dentist to fix my teeth and another fortune on doctors and ER visits only to be told there is nothing wrong with me.

    I am now blissfully married to a wonderful man. However sex is incredibly painful and I bleed afterwards and my stomach swells. We have went to so many doctors paying out of pocket only to be told, there is nothing wrong with me.

    I have severe anxiety that comes on me suddenly for no reason, often accompanied by being really hot and sweating and passing out and often being very verbally hyper…It feels like the anxiety you have right after you have a auto accident, inside it feel like a run away train but on the outside your exhausted.

    At this point we don’t know what to do and sometimes like this morning I just have a good cry. I have had to quit work 6 months ago because I just can’t handle it all anymore. The worst part is being told, nothing is wrong with me. Does anyone know a good DES doctor or attorney in Colorado? This has ruined my life and I just don’t know what to do. I am open for suggestions.

  4. I am a mother that was prescribed DES in the 1968-1969 when I was pregnant for my first daughter. I had had a previous miscarriage of twin boys in the 6th month of my pregnancy. It has been a nightmare ever since. When my daughter was born the doctors thaught she was a boy because of her gentiles looked like a male penis. Un be known that this was caused by taking the drug DES. Over the years my daughter had very abnormal periods. Most of the times she was bed ridden from the pain. We kept going back and forth to her doctor. When she was 14 years old they wanted to give her a complete hysterectomy. At this point we refused. Then when she was 16 years old came up again because of her reproductive organs were and her tubs had tumors. At that point and with a lot of prayers she and the family made that horrible decision as to give her a total hysterectomy. How many nights I cried. I blame my self for her hysterectomy and also I was selfish for wanting children. But thank the Lord she was able to adopt a wonderful son

  5. I am the son of a mom who was prescribed DES during my pregnancy. I have a variety of autoimmune/chronic pain conditions that first appeared in my late 40s. I have not thus far experienced the conditions (such as reproductive cancers) that are more commonly attributed to DES exposure.

    What I do not understand is why there hasn’t been a federal trust fund similar to those for asbestosis or black lung set up to pay the health costs for anyone who was exposed. Obviously the cost of cancers and chronic diseases that are occurring in greater rates are going to translate to a growing cost burden on programs like Medicare if something isn’t done to hold accountable those who research, develop, market, sell and commit to follow up on safety of the prescription drugs and other products they ask the government to approve.

  6. My Mother took des. In 1942, when carrying me, I wasn’t even born in a hospital, but on a farm, I have had all kinds of problems, over the years, I am now 74, and my hormone injections, whn I was going through adolescents, and my corrective genital, surgery, due to infantile genitals and bad endometriosis, and big tumor, caused m to have to have a abdominal hestorectomy, at 40, depression, and feeling transgenderall my life, is over, because I took care of my symptoms, ove the years, but believe me, I wouldn’t wish it on anybody, and I am so suprised, that some Dr.s are still giving,I T I was
    told, it was outlawed in the 70.s

    1. Hi Sandy, I to am a daughter of a mom that was given the drug after a miscarriage. I have been very sick my whole life, never feeling well always tired especially after the age of 40. I am now 57 and just finding out about my genetic makeup. I’m very sad that I’ve spent my whole life not knowing and I to have felt transgender. I lived as a homosexual but I knew in my heart I wasn’t. Most my adult life I hated looking at myself in the mirror without clothes, it just didn’t fit with how I was feeling inside.Wish I had known this at an earlier age so I could have surgery and become a whole person. But at my age I’m not sure!!! Thanks for you comment it helped me.

  7. My mother took DES and I had horrible cramps every month of my women hood life. My daughter has 3 children with Muscular Dystorphy and we have no one in my moms family that has had MD or anything like it. I would like to know if anyone else could tie the DES to Muscular Dystorphy ..

  8. My mom had taken this back in the mid 60’s. She had 2 miscarriages. The 3rd child has a mental disability. I was born next. I was told she was taken shots for only have the pregnancy with me. My younger sister none. However, with me I’ve had issues with my periods, fibroids, able to get pregnant but almost lost at 5 months and even delivered early. Pregnant 3 other times and miscarriaged all 3. I too have anxiety and deal with depression. My heart cries out that my only daughter doesn’t have issues.

  9. I was born in 1955 in California and when reaching puberty I had so many problems with my monthly periods. Cramping unbelievable, erratic cycles, even to the point, that in the 80’s, I began to hemorrhage while at work sitting in a chair among other male colleagues. Total humility and lack of control. I would not get up from my chair, thank goodness our executive assistant was female. She helped me out of such an embarrassing situation.

    I then found out that I was a DES baby from my mother. Fortunately, I was able to carry 2 births to full term. From there it only got worse with a tubal pregnancy and eventually an early hysterectomy. I too suffer from severe depression and anxiety.

    Sadly my 29 year old daughter is suffering the same as I did. I only pray that my granddaughters 2 and 7 are not cursed.

    Now my 29 year old is having all the same problems I had.

    1. My mom took that when she was pregnant with me. I am #9 out of 10 . I was the only one she took it with. I was born with an aneurysm in my brain. Which rupture and should of killed me in 1997. I was 37 yrs old and I was also born with a mitral valve prolapse in my heart. Today my left side of my heart is only working at 16% and I am probably gonna have a transplant sooner than later. Do u know of DES given unborn children any of these problems. God bless you and please get back to me on this. Thank you Johanna Suennen

  10. My mom was given DES in 1961 & 1963. I experienced 3 ectopic pregnancies: at 19, 24, and again at 24. I suffered terribly from severe cramps for ten years. At age 49 I had uterine cancer and a complete hysterectomy. I had very large masses in my uterus, that I’d likely had for quite some time before they were finally discovered. // My brother has had problems as well. He suffers from depression. He talks incessantly to anyone who will listen, to the point people don’t want to be around him. He has stomach & bowel problems. My mom developed angioedema about 20 years ago, and suffers from mental illness now. I don’t know if these problems are all DES-related, but I am sure some definitely are.

  11. I am a daughter of DES. Severe menstrual cramps and clotting in my teens. A tubal pregnancy at 19. Premature birth of my first child.Hysterectomy at 40, after 5 years of pain and docs telling me it was all in my head. I had a tumor the size of an 8 month fetus removed from my uterus, and a tumor the size of grapefruit growing on the outside of my uterus. the surgical pics looks like something from hell. My older brother had testicular cancer and blood clots and auto-immune disease. Younger brother has heart issues. My daughter has irregular shaped cervix and tumor growing from her spine. 2 years ago, at age 24, she had a tumor removed that was 18 x 18 x 11 centimeters. That surgery led to amputation of her leg and inability to conceive or carry a child normally. This drug has affected me and my children. The frustration that comes with it is enormous.

  12. My Mom was given DES to prevent miscarriage in 1969. I had learning problems and I have miscarried 2 times and the Dr’s said they are surprised I was able to have any children at all. I was able to have one daughter. I stopped having a period at 42 years old, I have struggled with Anxiety and have been on medication for many years. My teenage years were difficult due to alot of hormone imbalance. Wondering if anyone else out there had hormone issues with DES exposure?

  13. My mom had my sister, me, then my 1st brother. Then she had a couple of miscarriages, so when she got pregnant with my 2nd brother, the doctor put her on DES shots. My brother has always had mental issues. That was 1966. Then 6 years later, my sister was born. My brother, my mom and my sister was exposed to this horrible drug that should have never been put on the market. My sister has had some mental issues also. Even though my mom didn’t take DES with her, it was still in my mom’s system and she was affected by it, too, 6 years later!. But not as much as my brother. My mom and brother repeat their stories like we never heard them before. They all have suffered depression, anxiety, among other things. My brother talks loud and non stop. He seems to be in the world by himself, because when you try to say something, he keeps going like you are not there. 50 years later, my brother is in prison, my mom is devastated,and my sister has changed so much I don’t even know her any more.We three older siblings are fine. DES has destroyed our family!

  14. I am a twin. 64 yrs. old. I lost my twin sister in October of vulvar cancer. My mother was also a twin. Prior to having my sister and I, she also miscarried a boy and a girl(twins) at 4 1/2 months and then identical twin boys 2 years later. they lived for 4 days and died. When I got pregnant in 1970, I asked my mother if she took that drug. She said No. But in those days they didn’t tell you, they just did it, which would have been in the late 40’s. I have warned my daughter to get annual check ups, as I do also. She also had a miscarriage 9 yrs. ago, but since then has had 3 healthy children. It’s a horrible drug!

  15. My Mom was given DES when pregnant with me. She had 3 miscarriages before me, one boy and twin boys’ however that was caused because of her RH Negatve factor. When she was pregnant with me she started spotting and the doctor put her on DES. Actually I was RH negative too so the possibility of loosing me was slim. Well. Because of DES, I’ve had 3 ectopic pregnancies, almost dying in each case because of doctors did not beleive that is what I was suffering from. After the third ectopic I decided on trying for IVF since I had no problem getting pregnant other than the pregnancy settling in my Fallopian tubes. My husband and I went through the IVF, lots of injections before I got pregnant and a very painful surgery of extracting the five eggs. Well, it took and they placed 3 or 4 embryos back in me. I became pregnant and my numbers were rising so fast the GYN thought for sure I had twins. Well at around 8 weeks I started spotting and went to see the doctor and he could only get one heart beat. So I lost one of the Twins’ however one was still beating. Two weeks later that heartbeat stopped and I knew I was done with the whole thing. Broke my heart. I knew I couldn’t go through adoption because I had to take Prozac at the time for depression because of my situation and back then if you took an antidepressant you would not qualify to adopt. Thankfully I love animals and that’s what saved me, but not without emotional problems which has caused me a lot of problems since having a child was the only thing I ever wanted in my life. I’ve adjusted to a point but DES took all my dreams away. My husband has a hard time understanding why I’ve taken it so hard, However I remind him because he’s a Musician, it would be comparable to him losing his hearing and Never having access to music one musical instruments. I want to know if it’s too late for me to sue. This has caused me so much anguish most of my life. Money could never replace the family I always wanted’ however it could at least make the last part of my life easier to travel in the years I was hoping to enjoy children and grandchildren, which I would prefer. Thanks for listening.

    1. Hi Deb, I too had an RH Negative Factor with my son who was born in 1979. I was told at the time that my RH Negative Factor was killing my unborn baby. I received some shot that I do not remember the name was given to me. I went onto am unbelievable horrible delivery. After 48 hours of hard labor, I was put in a crib like cage and given a general anesthetic and baby was delivered via metal forceps. Within a week I had a massive uterine infection, in ICU with blood transfusions.

  16. My mother took DES during her last 4 pregnancies. My brother has had testicular tumors and I have suffered from infertility, ovarian cysts, and endometriosis. I finally had two children, both premature, and a hysterectomy at 40. My uterus has shrunk and I had fibroids. I am now experiencing symptoms of vaginal cancer.

  17. First pregnancy lost one other survived had to have 2 heart operations for holes in heart and is now at the age of 34 going to dr.s non -stop to see why he is having so much problems with breathing
    2nd pregnancy hemorrhaged

  18. My mom was having trouble with my brothers pregnancy and was given a drug to prevent a miscarriage in 1955 he had a lot of mental problems and murdered my mom in 1999 I don’t know if the drug had anything to do with this but my mom always said it did that was in la.

  19. Today I discovered I was a DES daughter. I’m 64 years old now. When I was 21 I had surgery to remove a fallopian tumor that had grown to the size of a large melon. I was never able to conceive. In 1951 my mother was given DES while carrying me to prevent miscarriage. She had a miscarriage with the baby she carried prior to me. In reading about the repercussions of this drug, I believe that another possible side effect that I have experienced is a battle with obesity. I’ve never had a satiation point that would tell me I was full. I have always wondered why I able to do so much when I set my mind to something but was a total failure at getting pregnant or controlling my weight. I cried today. I think it was relief to learn that these life altering issues might have been due to something beyond my control.

  20. My mom took DES to prevent miscarrying me in 1953. 18 years later I was informed that the drug had caused problems in the reproductive organs of the offspring of mothers who had taken it. I thank the Lord daily because I have 2 healthy children in spite of a deformed and misshaped uterus.

    My first born was born 6 weeks and my daughter was born 12 weeks early.

  21. My mother was given DES in 1962 in Dublin.I requested my birth records and peadratic records. Unfortunatley they cannot find my mother’s pregnancy records.They found my birth ones my older sister’s birth ones , it’s a bit odd that they have disappeared. Yes I also have fertility problems.

  22. My mother was on DES for preventing miscarriages. I know that all of us have had significant health problems. My younger sister died of cancer, my other sister has had forms of Cancer. I am the only male in the family and I have been suffering for years with health issues. My mother was not aware of how this drug could do so much damage.

  23. My mom took this des to prevent miscarriages she took it with me I was born at 24 weeks. I had 3 miscarriages 3 live births.at 26 I had endometriosis so bad they did a total hysterectomy. Now at 58 I am having discharge and bleeding I am now going through test . My immune system is a mess.

  24. I was pregnant in 1976 and I was put on a hormone pill to prevent miscarriage I had two. If I was on that pill what effect would it have on my baby boy has had a lot of health issues.

  25. My mom took des while pregent with me and my twin sister… to precent miscarriage, after an accident around 2 months pregent… now my daughter has had an abnormal pap smear, and needs to have a biopsy done.. what are her risks she needs to know about and can that be caused by the des medicine. .

  26. I took DES in 1970 to get pregnant and then to prevent miscarriage. I had a healthy baby, but she developed Acute Mylocytic Leukemia and died at age 15 1/2 months in Richmond, Virginia. What records would I need, and am I eligible to file a lawsuit?
    Thank you.
    Allyne Holland
    Allyne619@aol.com

  27. Thanks for this. At 13 my menstrual cramps were so bad I passed out cold in the vice principles office. The sex ed films in 4th grade never talked about this. In my thirties after a lifetime of infertility, I had an ultra sound exam. A person in a lab coat burst into the room exclaiming I was lucky to not have 2 vaginas, as I had two halves of a ‘T’ uterus. Yes, my mom had taken DES while pregnant with me. My dad explained he had to give her injections of this drug to prevent her from miscarrying. At 36 years old I had a laparascopic procedure to remove the adhesions from stage 4 endometrious. The pain was lessened immediately (I had not realized what a constant gnawing companion it was until then). Menopause is a relief, and I don’t know how I could have managed those many years before without Ibuprofen, which became available to me in my early twenties. I’ve had no children, a lifetime of pain, but, thankfully, no cancer yet. I have unwillingly given part of my life to this drug, as have many others.

  28. yes, my mother was given DES in 1959 . I had a miscarriage in 95. plus endometriosis . I am so sorry for you also. was told I have a spot on my breast . hope you are continuing the fight for your health and stsy strong .
    lots of prays for all the that must fight to stay healthy.

  29. I am different because of des. i am on a list because of it. I was sold by my parents to get money easily because of it and things have been done to me through my life, i have been tested and hypnotized by men, several times, scientologists, and I was tested in san francisco as a child because of DES, and they attempted to put me in a program of training, and the military was involved in this, they changed my catholic high school into the Monarch Program also, to “get” me.

  30. Thank you for writing about DES here, and for all the advocacy work you do to spread awareness of DES exposure. Millions were exposed but suffer their infertility, cancers, and other primarily reproductive system problems alone. Too many don’t realize they were poisoned before birth by a prescription drug that, it turns out, didn’t even work to prevent miscarriage. It just adds insult to injury knowing how shabbily tested DES actually was. If your mom had a prior miscarriage or a problem pregnancy with you, do investigate the possibility that you were exposed to DES. If your health experiences mirror those known to be linked to DES, you may have been exposed in the womb. Learn more – information is power when it comes to DES exposure!

  31. Thanks for raising awareness of the world’s first drug disaster. DES was also prescribed in Australia where it is estimated that more than 740,000 have been exposed to DES. In Australia, it was prescribed from the early 1940’s to the 1970’s for the same reasons as in the US, Canada and other countries. It was also prescribed during the controversial adoption process in the late 1960′s and early 1970′s. It was administered to prevent lactation in unmarried mothers forced to give their babies at birth under Australia’s adoption policies and laws. Carol Devine, Founder and coordinator of DES Action Australia (NSW) is working extremely hard to put the issue on the public agenda since the 1970’s when the issue came to light. DES truly is a worldwide tragedy!

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