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Diethylstilbestrol (DES Lawsuit)

Diethylstilbestrol (also called Stilboestrol or DES) was a synthetic hormone given to six million women worldwide between the 1940s and the early 1970s to prevent miscarriage. The drug was taken off the market when studies showed serious Diethylstilbestrol side effects, including a link between DES and vaginal cancer, in women exposed to the medication while in the womb. At least one DES lawsuit has been filed against the makers of DES, alleging women who were exposed to DES prior to birth suffered an increased risk of breast cancer.

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DES Side Effects

DES was prescribed in the 1940s, '50s and '60s to prevent miscarriages. Women were given DES in the form of a pill or a cream until the drug was removed from the market in 1971 after studies showed an increased risk of rare vaginal and cervical cancers. A study conducted in 1953 reportedly showed that DES did not reduce the risk of miscarriage, but the drug was still prescribed.

DES Daughters

Women whose mothers had taken diethylstilbestrol during pregnancy are potentially at risk for vaginal and cervical cancers. In addition, side effects in women that have reportedly been linked to DES include breast cancer, early menopause and infertility. Among side effects in men reportedly linked to DES are low sperm counts and undescended testicles. Unfortunately, given that estimates for the number of women who were prescribed DES ranges in the millions, the number of women who may have potentially been affected by DES side effects is also in the millions--and these women have become known as "DES daughters".

Diethylstilbestrol Side Effects

A federal study conducted in 2011 found that infertility is twice as common and the risk of breast cancer nearly doubled in women whose mothers took DES. Results of the study were published in the New England Journal of Medicine (10/11). Among women who were exposed to DES but were able to become pregnant, there were reportedly increased risks of preterm delivery (five times the risk), miscarriage (four times the risk), tubal pregnancy (four times the risk), stillbirth and preeclampsia.

Diethylstilbestrol DES cancerThe study found that two out of three study participants who became pregnant had premature babies, while almost 60 percent had a spontaneous abortion and 25 percent had either an ectopic pregnancy or suffered preeclampsia. Researchers also found that women with abnormal vaginal tissue samples, which indicated higher doses of DES exposure, were more likely to suffer DES side effects.

Meanwhile, an earlier study from the US also found that women whose mothers used the anti-miscarriage drug have double the risk of breast cancer than others their age. The US research indicates that the danger will grow as the 'DES daughters' approach menopause. Daughters over the age of 40 are up to 90% more likely to get the disease. Doctors are urging women whose mothers took the drug to examine their breasts regularly for signs of cancer.

According to reports, in addition to a possible increased risk of breast cancer, women exposed to DES have approximately 40 times greater risk of vaginal cancer than women not exposed.

It is not yet known if the daughters of DES daughters will suffer any third-generation health problems linked to DES.

DES Lawsuit

A lawsuit has been filed against the makers of DES, alleging women suffered breast cancer after being exposed to DES. Among the defendants in the lawsuit are Eli Lilly and Bristol Myers Squibb. The lawsuit is currently being heard in court in Boston. In December 2011, a judge denied Eli Lilly's request for further post-hearing briefing. So far, more than two weeks have been used to hear expert testimony for both the plaintiffs and the defendants. The judge has now ruled that the expert testimonies have officially wrapped up.

Diethylstilbestrol (DES) Cancer Complaint

If your mother took DES while pregnant with you, and you have now contracted breast cancer, you may qualify for damages or remedies that may be awarded in a DES class action or lawsuit. Please click the link below to submit your complaint to a DES lawyer for a free evaluation.
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DIETHYLSTILBESTROL (DES) LEGAL ARTICLES AND INTERVIEWS

DES Daughter Caitlin McCarthy: "Maybe DES Will Finally Get its Day"
DES Daughter Caitlin McCarthy: "Maybe DES Will Finally Get its Day"
January 21, 2013
Boston, MA In the wake of the somewhat surprising--not to mention abrupt--end to the DES lawsuit filed by the Melnick sisters against Eli Lilly, there has been a flurry of activity from people who were exposed to the drug, and those who support them. Although the DES breast cancer lawsuit was settled for an undisclosed amount, and without Lilly admitting any responsibility, people familiar with the situation say the time is coming for Lilly to finally admit its drug causes breast cancer [READ MORE]

DES Cancer Survivor Has Battled Cancer Six Times
DES Cancer Survivor Has Battled Cancer Six Times
January 3, 2013
Batavia, IA One can imagine the heartbreak and anger associated with taking a drug that had been on the market for 30 years and had been prescribed to millions of women, only to be later found to have a serious liability and removed from the market. Why did it take so long to get Diethylstilbestrol (DES) off the market? And why were these concerns not suspected sooner [READ MORE]

DES Daughter Caitlin McCarthy: "You Might Not Have Cancer Today, But You Could Tomorrow"
DES Daughter Caitlin McCarthy: "You Might Not Have Cancer Today, But You Could Tomorrow"
August 8, 2012
Worcester, MA For Caitlin McCarthy, one of the many women who was exposed to DES (diethylstilbestrol) prior to birth, discovering she was suffering from DES side effects was a shock. She had no idea she had been exposed to the drug, and therefore had no idea about the link between DES and cancer, or the health risks she faced. But that shock did not stop McCarthy from lobbying to obtain an apology from the US Food and Drug Administration (FDA) for its role in the DES pregnancy tragedy [READ MORE]





READER COMMENTS

Posted by
Marie Rampino
on
I am also a DES daughter. I am 62 now. I had my share of reproductive horror stories. I lost 3 daughters before being diagnosed as a DES daughter. My mom had passed away when I was 10, so I did not know. I have always suffered from severe anxiety and depression since I can remember. My major issue at the moment is recurring UTIs. Does anyone else suffer from this. I live in the Boston area. I would love someone to reach out to me. I can't live like this anymore

Posted by
debbie
on
My mother also took DES back in 1959. I have since been unable to have children due to a T shaped uterus as a result of DES. I paid thousands of dollars to try & have children & has since adopted. My gynecologist said this in one of the worst cases of T shaped uterus she has seen due to DES exposure. Now we have an increased of breast & cervical due to exposure to DES. I agree this destroyed me emotionally too! Yes if only the internet had existed back then!!

Posted by
Gail
on
My mother took DES when pregnant with my brother. There is 21 months difference in our age. I was diagnosed with uterine cancer in 2009 and had a radical hysterectomy. Could the DES have affected me? Is there research on any affect on the mother"s eggs, or the children that are born after the pregnancy she took DES ? The Doctors said that I was not the typical patient that would get endometrial cancer.

Posted by
Valerie prather
on
Wow I had no idea that DES was the cause of all my pain and surgeries. I also have had 4 surgeries where they took out some of my small intestine.
I have have vaginal infections constantly. I found out from my new Doctor that I have a rare yeast infection caused by DES.
My mom took DES with me when she found out she was pregnant she did not want to have another miscarriage.
Why oh why are we not told of the complications and what to look for.
My mom told me she had taken DES and I had to see a doctor and he did cryosurgry on me. I never new that it was still haunting me. Why didn't the doctor tell me more?

Posted by
Sue Crawford Carver
on
It wasn't but a few years ago I realized I was not the only one who suffered from DES. I started showing signs of excessive facial hair growth at age 12 and by 14 I had a rare cancer and the Doctor remover both ovaries and cervix. By 17 cancer returned and radiation and more surgery.
In the past 40 years Ive lived with many health issues all associated with DES.
Last year I started writing a book about my life story with DES. I'm proud to say I got it published "ABOVE THE FOG".
I have found some peace with telling my story.
We all have a story to write.

Posted by
Sarah Ronquillo
on
I am a DES granddaughter. I never knew my grandma or grandpa because they both died of cancer when my mother was 9 and when the other parent died she was 12. I was told that during my grandma's pregnancies that she was given DES. I'm sure I can go to the hospital that she delivered in and get some sort of proof that the medication was prescribed to her, but I'm not sure if it's worth the time. I'm now 31 years of age. I started my monthly cycle at the age of 12. My periods were so heavy and lasted for days that I became an anemic. I had my first child at the age of 16. Since then during and after my pregnancies I have always had an abnormal pap smear. In 2005 I had an office visit that was a simple procedure to freeze my abnormal cells so new normal cells could grow in return. I have 5 children. After my fourth child I didn't go back for my six weeks check up because I was on my cycle. I know they do a pap smear at that time, which is why I didn't go. Well a year and a half had passed and I had noticed some disturbing things that were going on. During sexual intercourse I would bleed very heavily. Now I never had sexual intercourse while being on my cycle cause that's just gross. My husband had noticed as well. After words there would just be blood all over one another. So instead of going to the doctor because I was a very busy mom. My husband and I just didn't have sex. Three months had passed and I finally had to pay out of pocket for a well women exam. Which was $265. Hence why I didn't go before. Who has that kind of money lying around. My physician had notified me through phone and told me I needed to have a surgery scheduled ASAP. It noted on the pap smear results that I had severe dysplasia. Most of the time women who had cervical cancer or dysplasia have HPV. Well I tested negative for that. So the next day I went for my pre-op and had a leep done that day. Which is basically they go in with a extremely hot metal thing and just rip through your tissues making sure they remove all abnormal cells. After that surgery my doctor informed me to wait 40 until having sexual intercourse. I waited about 60. She knew I wanted 1 last child. Never once did she inform me of waiting longer because my cervix would not be that strong. Sure enough I became pregnant and had a healthy pregnancy until my 31 week my water broke. I was rushed to the hospital where I had to stay in bed from July 8, 2011 to July 23, 2011. My baby girl was born on July 23, 2011 and to stay in the NICU for 3 weeks. Shortly after my birth I had a tubal ligation. Permanent where the doctor burns the fallopian tubes. Eight months later I was pregnant with twins. The first was I actually formed a placenta but miscarried after the first month and a half. The other I had no idea I was pregnant with until my tube ruptured. It was the worst pain I had ever felt. Some time in June of 2012 I had a hysterectomy due to what the doctor "thought" was ademyosis. Which is a condition of the uterus which causes one to have extreme abdominal pain. Well after removing my uterus and deformed fallopian tubes the doctor noted that I had no such thing and that my uterus was in perfect condition. I have to say I have a hard time trusting doctors with their false implement. Which is why I'm now pursuing a Bachelor's in Science and Nursing. 15 months to go. Did I mention that my grandma had died of breast cancer after having both of her breast removed. If I could I would sue the pharmaceutical company for manufacturing DES. This is why taking medication is so complicated for patients because after 30 years or so some one decides to come along and do more research which shows different outcomes and complications of medicine. For example: HPV shots. Doctors all around are trying to push mothers to give to their children. Ok well lets see how long has this product been on the market. Is it FDA approved and what are the LONG TERM side effects of it. Another one is Mesh. they use tissues from the pig to alter bladders and other things. How many commercials have I seen that say have you or a loved one had mesh surgery if so please call this 1800 number for a cash settlement. Like that will help with my health. They couldn't pay me enough to undue what has been done. The only thing I hope for is understanding and adequate research of medicines given to our next generation. The FDA needs to step up and put more restrictions on medicine until enough research has been gathered. LONG TERM. I'm sure if my grandmother had knew that DES was more harmful that research had showed at the time then she would still be alive and I would of had a chance to meet a wonderful women. If anyone has any contact information that may help me file a lawsuit against this matter please contact me. GOD bless every first second and third generation of the women of DES. I hope you have found closure if you have lost a loved one to the complications and outcomes of DES. Please continue to fight for our generations to come about different types of medications and vaccines that are harmful to our children.

Posted by
Joan P
on
I was born in 1959 and exposed in utero to DES. My mother had a miscarriage prior to me and twins born prematurely at 6 months. I suffered from endometriosis and fertility problems. I had a tubal ligation in my early 30"s to relieve the severe symptoms of the endometriosis. I have suffered with depression from a very young age and was diagnosed with Bipolar disorder after a suicide attempt. A study in France has shown that many who were exposed to DES suffer from serious mental illness. I am curious as to whether anyone else has had these problems or aware of any lawsuits regarding this.

Posted by
Rlobin
on
I am a des baby, my mother took he drug while pregnant. I was born in 1956. I started my monthly late age 15. When i was 23 years old i had a tubal pregnancy. It was absolutely horrible, all the pain, the bleeding before the doctor figured it may be tubal pregnancy. So scarey to go through, was toldi could die if this tube rupured before surgrey. I've had terrible depression, anexity, since i was around my middle 30's. Still to this day i battle with this horrible disease, depression. Some days i can't get out of bed to do anything, it is a fight. Now i wonder alot if this drug has contributed to all the problems that i have now. Any one else have these problems?

Posted by
Susan
on
I am 67 years old and a DES daughter. I have had numerous pre cancerous pap smears. I am concerned that the day will come that I no longer have pre but full blown cervical or uterine cancer. Or my daughter or grandchildren will also be affected.

Posted by
Olivia McGuire
on
I was born in 1965. My mother, God bless her, says she never took DES. I have been told by numerous doctors that I am a DES baby because I had the signature cockscomb over my cervix. I had many female issues when I was younger and an emotional imbalance. They treated me with HRT FOR 4 years throwing me into menopause. Mentally my life was handed back to me. My emotional imballence was actually a hormonal imbalance.They finally diagnosed me with endometriosis and at 27 had to have a hysterectomy. 4-5 years later I had to have 3/4 of my colon removed, there was endometriosis growing on the bowel side by my spine. Every doctor I see, weather gastro, GYN, breast doctors all end up with ohhhhhhh you're a DES baby. What do people like me whose lives have been constantly terrorized by it do? Is there any recourse for me? I have medical records stating everything. I need help and direction. I am still on HRT AND AM NOW 50. Been through menopause 3 times. I am at high risk for breast cancer. WHAT DO I DO?

Posted by
Dawn Wright
on
Well I have not had any breast cancer issues yet. I have failed mammograms but nothing that is a problem. Gods Blessings!

When I was younger I had a few dnc's to clean out my lining due to my period and excessive bleeding. I was on birth control not for birth control but to regulate my period.

I did take infertility drugs and lost my first child to a premature birth at 25wks. Then my second child was born at 27wks. The 3rd and 4th births were full term but I had to have a cervical cerclage put in with them. Labor was long and hard due to scaring tissue from the cerclage.

I have to say that the infertility drugs had there own side effects.

I am now 56 and calling it good and having a hysterectomy

Posted by
Jan Finn
on
Further to JAP post on June 2nd. Although I haven't had any cancer scares, thankfully, I did experience fertility problems and had an early delivery once I became pregnant. My main lasting symptoms are similar to JAP - chronic fatigue, severs depression, lethargy, endocrine problems -hyperthyroidism, diabetes and no immune system. I've always known my mom had a history of miscarriage and had 9 months bed rest with me but she has just mentioned she was given 'hormone meds' in order to prevent a miscarriage with me. That has led me to research DES and WOW it all fits. My task now is how to remedy all these medical problems to enable me to live a my life. I don't want another 20 years of existing. I want my life back

Posted by
JAP
on
I was born in 1955. My mom found out about the problems with DES when I was about 21, (1975-76) and told me. She didn't know there was an issue until then. And, bless her heart, she worried so much about having taken this drug...but we are BOTH victims in this! I was biopsied, and was told I had DES in me. I got pregnant in 77, but went into labor in 6th month. I had hysterectomy at age 28, due to fibroid tumors. I had problems with endometriosis for years before. I have had so many health problems....endocrine..(empty sella syndrome, they can't find my pituitary gland, no HGH in adulthood,hypothyroidism, severe depression, and Porphyria). I now have dry eyes, and other problems, along with debilitating fatigue and constant uti's. I started wondering if the DES has anything to do with all these issues. It's very frustrating, trying to get to the bottom of these problems. Have any of you had pituitary issues? I would like to figure out the puzzle of all these frustrating issues.

Posted by
susan
on
I have just posted a comment but would like to post again. My heart is so full of love and heart ache for all of you. Your stories are heartbreaking. Some of you have not acquired cancer yet, neither have i. But we have had terrible complications due to this drug that wasn't even evaluated as being able to keep Mothers from having abortions. The makers knew it was causing problems and did nothing for 15 to 20 years later, reaping in all those millions of dollars while we were being lamed. Now, they say we have to be on our death bed in order to sue them for what they did to us. They knew it in 1963 when I was being borne and did nothing. So why do I have to be dyeing of cancer to sue them for what they knowingly did to me? How convenient though that my doctor died and just after, his office with all his paperwork went up in flames just after his death if not just before. I may not ever be able to prove it, but there is a fight we millions of us need to get together to fight!!!! They wronged us, they deformed us and they manipulated our cells in a very negative way. If we stand together, we can fight this and show they world what they, the pharmaceutical companies have done to us and our children. This is atrocious and would never be allowed in todays world. Join with me and fight, show the world what these drugs have done to us. I'm not talking being awarded money, I'm talking the nation being awarded the information, the knowledge that pharmaceutical drugs are not what they are cracked up to be. So they are careful what they allow into their bodies. I'm pissed off.... aren't you?

Posted by
Susan Stepanchuk
on
I was born in 1963. I am a DES baby like all of you and was raised knowing DES was a part of my life. I have an uplifting story that may help some of you. I tried for many years to get pregnant, would be late with my period and than start with clots in the toilet. I would always check them and wonder if they were the onset of fetus, I'd say a prayer for it and flush. At 36 years old, I'm pregnant and shocked. Because of being a DES baby, my doctor sent me to a specialist women center at Central Baptist Hospital in Lexington KY. They, three of them, suggested an abortion because the pregnancy could end in a miscarriage that could kill me too. I stood firm and said I am hanging on as long as my baby is hanging on. So they sewed by cervix shut so my baby wouldn't fall out of me at anytime. Her and I made it through the pregnancy and she is a beautiful 16 year old today, healthy and vibrant. I, on the other hand, suffered damage from the pregnancy because of the specialist at the womens center at Central Baptist in Lexington KY, totally their fault. They neglected to take out all my stitches which made my water blow out the side of my cervix causing monumental infection to set in. So, 9 months after my daughter was born I was rushed to the emergency room hemorrhaging and dying.... I had an emergency surgery followed by a hysterectomy 6 months later. Although I still live with complications since their mess up with me, it has been 16.5 years and we're both happy and living life. Because of the cancer issues related to DES I have found other avenues by using organic products. I use a salt stick for under arm deodorant. It has no other ingredients, so don't be fooled at the heath food stores. Regular deodorants have aluminum which I have researched and found causes breast cancer. You are applying this right on to your lymph nodes. STOP IT!!!
I use pure coconut oil as a progesterone on my upper thighs which keeps me so incredibly balanced that when I don't use it, I am a witch, I hate everyone and feel frantic. Coconut oil is Gods gift to us all!!!
There are many more ways I refrain from in order to curb the appetite of a rare cancer due to DES.... I intend to be here to dance with my grand baby at her/his wedding :)

Posted by
Jody Ramirez
on
I am a DES daughter born in 1968. Started my period started for the first time when I was 10 years old first pap smear at 11 years old. I have one child. I am absolutely petrified so I have not had a physical or a pap smear in the last 16 years. All my life I have had horrible periods horrible cramping and clotting. I am scheduled to have my first Pap in all those years in the next two weeks. Growing facial hair my hot flashes and night sweats I do believe I am enterings menopause. I have however had horrible problems with depression my whole life. I mean life consuming depression and it seems my son has inherited the same. This will sound kind of strange but I just don't want to take the depression medications. That seems to be the answer for every doctor is to prescribe medicine. I just don't like to take medicine. It seems like you trade one symptom for 10 others. I mean seriously, isn't that what Got Us Des babies in the position we're in now? My first time researching Des I discovered that depression is a common side effect with First generation Des babies. I'm curious to know if there is anyone else that has suffered the same.

Posted by
Jeannette
on
Uterine and cervical abnormalities, ruptured ovarian cyst w/ poison going through system, almost died, no period after 39, infertility, painful and erratic periods,lupus and melanoma

Posted by
Lisa L Tannert
on
I was born in 1963. My mother was given the DES drug during her pregnancy. I have had serious problems my whole life starting in Junior high school. Parents did not know what was wrong with me at such a young age. I have been on the doctors examination table since I was a young girl. I refer to myself as a guinea pig. The very first time I had a examination the Doctor, who did not know what he was looking at told me my cervix was eroded! Imagine how I felt. I was scared shitless. My parents did not know why I would have this. Finally I was referred to a WOMAN DR. who immediately suspected DES exposure. She told me to ask my Mother if she remembered taking this drug while pregnant. We had to go back and search for the medical records which was difficult because her Dr had long since died. Well, we found the records and BINGO it was there. She had taken this drug. My life has been one surgery after the other. In my late forties I discovered a large tumor on my ovary. Dr went in and said if he finds more he will do total hysterectomy. He only took the one ovary. 1 week later I get a phone call from him that they screwed up and there was cancer on the other ovary. Back to the operating room. I have been gutted like a fish. I am alive today due to my Doctors and my own diligence. I feel that all of us that were exposed to this drug and have suffered the effects do not have a voice. We have been swept under the rug. This is a dirty little secret that the medical profession and the pharmaceutical companies got away with. Where is our justice!

Posted by
JENNIFER
on
I am a DES daughter and have endocrine issues as well as neurological. I have had a hysterectomy and was diagnosed with JDM (juvenile dermatomyositis) at the age of 7. My life has been difficult compared to the norm. No issues with breast cancer the lawsuit is too narrow.

Posted by
char
on
My mom had 13 miscarriages and the doctor gave her des thou out her pregnancy with me. From what i remember my mom told me this at age 12. As to-date ive had clear cell cervical cancer at age 21 removed with cryo successfully. a tubule pregnancy. 2 live births difficulty because of small hips. five as neoplasm carcinomas surgeries to-date and reconstructive surgery after and still test abnormal to-date. but doc is watch and see at this point.
Now here's the thing I am a girl and never had any notion of being otherwise but all my life people would ask are you a boy or a girl? My mom said the doctor told her i would be boyish like in behaviors. I am left handed and an extreme tomboy.my ring fingers are longer and my index fingers ive always got along better talk to males than females and relate to them better. anatomy wise im girl, sexual orientation heterosexual. I read somewhere that i may have suppose to be a boy but reverted back to female because of high doses of DES and part of my brain( the part that gives men drive is larger) Even a nurse at the hospital after surgery called me an (it) i have suffered greatly all my life for this. lil children come to me and ask are you a boy or a girl. I never married but had 2 children. they wouldn't marry me cause im too ugly. so its been almost 2 decades at being alone. So yes i also have suffered from this evil drug.

Posted by
Sue Crawford Carver
on
I'm a DES daughter. At 14 I had ovarian cancer.removed ovaries and cervix. At 17 same cancer. I then had massive amounts of radiation and surgery. Radiation has caused many other problems all stemming from DES.
Precancer thyroid and partial removAL of left lobe.
Lymphoma with more radiation, 100s of lypolma tumors on arms and legs.
Kidney damage and intestine damage from radiation, sever depression and the list goes on.

Posted by
Anonymous
on
Born in 1960, it wasn't until after the birth of my third child at age 31 and when I opted then for a tubal ligation that my mother told me that she had taken DES.

I was nearly 16 before I got my first period and my mother worried that I would be infertile based on what she had read and the doctors had told her so she chose not to tell me anything for fear that it would "psychologically" affect my attempts to get pregnant.

Either I am lucky, or the folks that have had no problems are not posting. I Have been pregnant 4 times, lost one but that was because I got pregnant with and IUD in place so no infertility problems there.

At age 55, my menopause was late, at age 53, considering the late beginning of my periods, I would say that is normal.

I have regular checkups, GYN exams, PAPs and Mammos. No malignancies, a few scares but all benign.

Just wanted to post this to show it is not all gloom and doom. I am sorry for those that have had trouble. I guess I am lucky but the lucky ones need to weigh in here as well.

Blessings!

Posted by
karen
on
I am a DES Daughter from the late 50's. My Mom took the DES drug to keep her from having a miscarriage with me. I was told by my Mom when I was 46 yrs old. She should of told me before I had any children. I had uterine problems through out my life. Had cervical cancer twice (23 yrs old and 48) and a miscarriage with cervical cancer and a full Hysterectomy at 50 yrs old, Hypertension after the Hysterectomy which is kind of under control, hemarrhaged before and after birth of first child (daughter) with a C-Section, had two sons one born with Squamous Cell Carcinoma and one with Craniosynososis, have a Connective Tissue Disorder since I was 13 yrs old now Rheumatoid Arthritis at 57 yrs old. I have had 18 leg surgeries with bi lateral knee replacements with two revisions each knee, Palmo Plantar Hyperkeritosis, nails nd skin problems, pre-cancer of esophagus(with ablations) and pre-cancer of the colon. I believe it does affect Third Generation as my children have been born with disorders as well. Not on talking terms with Mom so don't know how to get info to file a suit but I have an idea. I wish she had told me when I was young so I would have had better understanding of disorders I had while growing up.

Posted by
marybeth
on
I am a DES daughter. I found out in 1973 at the age of 12, nice to have a pelvic exam at that age....not really. I was told at that time I would never have children. In 1986 my mother died from breast cancer at the age of 59 due to DES. We were told that there were lawsuits but we needed her reecorfs...conveniently the oned from her pregnancy with me were missing. 1987, at the age of 26 I delivered my daughter 6 weeks early, vaginally, however due to hemorrhaging plus kidney, liver and respirato failure I had a hysterectomy 2 hours later. I survided fortunately. One year later, having found a great GYN I had cryosurgery on the cervix and finally had the first normal pap ever. Menopause symptoms started at the age of 35 and are still in full force at the age of 54. I have now been diagnosed with VIN III. My new question is in reference to any type of hormonal treatment, especially soy. After all these years I am fed up with the hot flashes and night sweats. Can I use these safely? I have tried effexor, but the side effects are horrible, so I am looking for a natural solution.

Posted by
Cindy C. D.
on
I was born in 1959, I am a DES baby, I have been pregnant 14 times, no live births. My last pregnancy a surgeon diagnosed me as a DES baby.

Posted by
Sheila Camp
on
I, too, am a DES daughter. Mother was giving this drug in the 1960s to help her with spotting while pregnant. My "fun" is just now starting. I had early menopause at 47 was given HRT drugs. Now for close to two years I have been fighting severe, chronic lower back pain followed by blood in my urine. (Mind you, I see a chiropractor once a week so that's covered) 10X the amount actually. Had a gall bladder sonogram Nov 2014. A vaginal sonogram and the like. Nothing was found and no indications of infections or cancer. Here we are a year later and again blood was found in my urine. About 10X higher than usual. Same story, different day. Another sonogram of both the aforementioned procedures is to take place within a few weeks. Has anyone experienced the same symptoms? What were the remedies/diagnosis? Any suggestions?

Posted by
Gloria Pinis
on
I am a DES baby...many years ago I was assigned a number that started with Des??????...once in a blue moon I would get a update for my registry....anyone else do this or know anything....I was born September 1950...I have two grown sons...but at age of 24 I had a hysterectomy...now seems breast cancer may be rearing its ugly head...

Posted by
RC
on
My wife, who is in her early 50's, was a DES baby, and I am trying to learn all I can for her about proper health care and legal issues. We are in Texas. We were never able to conceive a baby of our own. Could DES be the cause? What are reliable sources of medical and legal info.?

Posted by
Cindy Scott
on
Last time I checked, in SC I have no recourse for my mom receiving this drug when she was pregant with me. I had Breast Cancer because of it. Is this still true.

Posted by
Kristin Hafer
on
I'm a DES daughter who had 4 misscarriages and now with several auto immune diseases. I had my uterus removed when I was 35. Now almost 60 I'm being checked for ovarian cancer. I have MS, Crohn's, Grave's diseases to mention a few. More and more Dr.'s don't even know what a DES daughter is or how to treat. They all are amazed I have so many health issues, that started in my teens.

Posted by
Liliana
on
My brother was exposed to this drug and he has no children ... was there ever a study on male post exposure??

Posted by
Anonymous
on
After my older brother was born in 1948, my mother suffered two miscarriages, each three months apart. She started taking DES immediately after the 2nd miscarriage and throughout her entire pregnancy with me. I was born, a son, in Dec 1949, as the surviving twin in a vanishing twin syndrome pregnancy. The second fetus disappeared in her third trimester. I started suffering from prostate problems and daily migraines when I reached my 16th birthday which have continued throughout my entire life. I also started suffering from severe Gender Identity Dysphoria beginning at the age three.Throughout my entire childhood, I was beaten up by other boys on nearly a daily basis, was called all sorts of names, ridiculed and avoided. Other than my two older brothers, I never had a single friend while I was growing up.
Ten years ago, the migraines and cluster headaches became so severe, I could no longer work so I attempted suicide. Having failed, I sought professional counseling for my family, financial and Gender Identity issues. I was diagnosed as having extreme Gender Identity Dysphoria and started on the only known solution - i.s., transitioning from male to female. In doing so, I lost my wife, three children, my three brothers and their families and all my friends. Two weeks after my counselor started me on female hormonal therapy, my migraine and cluster headaches stopped and have not returned since then. I was able to work again and got an excellent paying job as a senior software engineer for a fortune-500 aerospace company. A month before starting the job, I underwent extensive facial femminization surgery to increase the probability of my being accepted as a biological female on the job. I was very well received on the job except for three individuals who had interviewed me. In November 2007, my medical doctor asked the Plan Administrator of my Company's health plan if they would approve medically necessary Gender Reassignment Surgery. The Plan Administrator said that I should find a surgeon who would perform the surgery and have them submit a request for prior approval for the surgeries. I was able to find a surgeon in the U.S. who would perform the surgery but had to pay a rather significant down payment in order to schedule a date for surgery. The surgeons request for prior approval was verbally denied by the Plan Administrator who refused to provide a written denial as required by ERISA law. A few days later our new group manager was told that I was transgender. I was fired on the spot. I reacted by another suicide attempt. Due to my age and inability to provide personal references, I have not been able to obtain employment since then. After two years of communicating with the Centers for Medicaid and Medicare, I was able to have the 30-year old blanket exemption for 'sex-change surgery' removed from Medicare. Theoretically, Medicare will now provide coverage for all medically necessary Gender Identity Dysphoria services. Practically speaking, the 'coverage' is really non-existent - there are only a handful of surgeons who will perform the surgery, most of which do not accept any payment other than cash. Those who do accept Medicare patients are not willing to request the surgery and even if they did, the patient would still be responsible for paying half of the cost of surgery in cash in advance of the surgery. Hence, my condition will continue to cause me immense physical and mental pain and suffering until the day I die. If you know of someone who suffers from Gender Identity Dysphoria, know this, it is perhaps the cruelest medical condition any person can have the ill-fortune of being born with. It insures that they will suffer intense mental pain throughout their life, will probably commit suicide before they reach the age of 40, will never have a decent job, will lose their family, friends and loved ones, will live in extreme poverty, will have no access to adequate medical care and will die alone. This is what I have endured and have to look forward to, just because my mother took DES in order that I may be born.

Posted by
Anonymous
on
I am 58 years old and found out when I was around 20 that I am a DES daughter. My mother was prescribed this drug in the 50's to prevent miscarriage, which in my case and for her next child, was effective. We were both “threatened miscarriages.” DES was prescribed “prophylactically” in the 50’s. I was under the care of my mother's gynecologist who also delivered me, so he knew my complete history. This doctor performed a colposcopy exam every year for adenosis due to DES exposure along with PAP and exam. Between 18 and 20 years old, I developed severe mittelschmerz (ovulation pain) and had an ovarian cyst removed which was caused by endometriosis. Back in the 70's, the only treatment for endometriosis was the birth control pill, which suppresses ovulation thereby reducing the endometrium (the lining of the uterus). I did not tolerate the pill very well; I was switched several times for various side effects. After the birth of my first and only child in 1985, the placenta adhered abnormally to the wall of my uterus; diagnosis: placenta accreta. When the obstetrician went in with his hand to remove the placenta, I hemorrhaged and received a blood transfusion. It was like removing a scab. It three years later in 1988 that the medical community deemed DES mothers as “high risk” during pregnancy. I was not well enough to take care of my baby until he was 6 weeks old. I had quite a lot of rotting placenta inside me still even after a D & C at 4-weeks post-partum. I was anemic from hemorrhaging with fever until 6 weeks post-partum, when a final piece of placenta was expelled by my body. Five years later in 1990 I had a total hysterectomy. The severe ovulation pain was still present and I was not tolerating the birth control pills very well. The same doctor that delivered me and operated on me at 20 years old, was my surgeon at 34 years old-- again. Around 10 years later while in my 40’s in the mid 1990’s, my gynecologist retired and I asked for my records to transfer to another physician. As I read the doctor’s notes, I learned for the first time that I had various abnormalities of my reproductive system, specifically, an “abnormally small vagina and cervix “and structurally, my vagina was “off to the left”. I started to realize that my doctor was not open and honest with me during his many years of care. He was heavily involved in tort reform back in the 70’s and he withheld this vital information about my anatomy thereby preventing me from being included in class action lawsuits going on during that time when the DES tragedies were reaching a peak concerning a rare form of vaginal cancer in DES daughters. He was more interested in satisfying his own political agenda and career interests at my expense. After all, he delivered me, was the prescribing physician to my mother and now 20 years later and beyond, treating me and operating on me. What a better way to control a patient for your own satisfaction than to have one right within your reach! The only reason he would not have agreed to remove my uterus and ovaries is to allow me to have more children which I was not willing to do given the circumstances surrounding my son’s birth. Otherwise, he was more than willing to remove the evidence. Following the hysterectomy, I developed renal disease and hypertension. There is no history of either in my family. Two years ago, I had a kidney transplant. My donor is my second sister, also a DES daughter with adenosis. So far, I have found no research that conclusively links DES to renal failure or estrogen therapy to renal failure. I currently suffer from severe hot flashes, profuse sweating, and osteoporosis. Although I was told I would be taking estrogen “for the rest of my life”, I was taken off ERT 7 years ago to take Evista for the osteoporosis. With the passage of 7 years since ERT it is now contraindicated. I have to suffer with the symptoms of menopausal syndrome for my remaining years, resulting from a hysterectomy at such a young age. One thing leads to another. If only the internet had existed back then.

Posted by
Ohio
on
Hysterectomy at age 30 due to precancerous biopsy results, thyroid removed due to precancerous biopsy results, precancerous growths removed from colon, autoimmune disease.

Posted by
California
on
Cervical cancer, tubal pregnancy, infertility, which destroyed my life emotionally, mentally, and physically.

Posted by
Florida
on
Uterine and cervical anomalies, Infertility, advanced endometriosis.

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