Finding effective ways to spread DES awareness
My DES Daughter Network blog is the little sister of my “Diethylstibestrol, Journal of a DES Daughter” website blog but with a focus on social media and social networking.
This blog provides me with an additional platform where I can express myself about DES issues and share my experience of using social media networks to support this cause with others interested in the health and personal problems associated with DES exposure.
DES Daughter Network
Around the world, thousands, maybe millions of people are totally unaware that they were exposed to Diethylstilbestrol DES , a toxic and carcinogenic drug. All of these people are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.
How do you reach out to these people? One answer which immediately came to my mind when I started writing my “Journal of a DES Daughter is through the use of social media and social networking.
Nowadays, social media and social networking tools are vital to building a strong online presence. The use of social media is stronger than ever. Facebook, Flickr, Google+, Twitter, YouTube are just some of the popular forms of social media used by millions around the world on a daily basis. Chances are, anyone you speak to today has at least one, if not more of these accounts.
To me, social media is simply the easiest, fastest and cheapest, yet effective way to raise DES awareness.
The 4 “C’s of Social Media for the DES cause
Connect, Contribute, Collaborate, Change
Connect: DES, like social media, is about people. People affected by this drug disaster often feel lonely and would benefit from connecting with other DES victims.
Contribute: DES information needs to be instantly available to the public to generate an instant reaction and increase awareness.
Collaborate: DES is a worldwide tragedy. DES information, studies and data need to be shared to better understand the full extent of the health issues associated with DES exposure. Social media increases potential for collaboration.
Change: The DES story needs to be told not just through studies, statistics, numbers and figures but through real life experiences. The collective voice of DES victims on social media platforms can bring about change. Lessons must be learned so that history doesn’t repeat itself.
Despite the number of people affected by the DES tragedy and the hard work of DES support groups and activists, the DES cause is going unnoticed, or not noticed enough amongst the general public. The use of social media has the ability to change this. In today’s fast-moving world, we will make a difference and bring about change only if we connect, contribute, and collaborate.
More DES DiEthylStilbestrol Resources
- DES studies on cancers and screening.
- DES studies on epigenetics and transgenerational effects.
- DES studies on fertility and pregnancy.
- DES studies on gender identity and psychological health.
- DES studies on in-utero exposure to DES and side-effects.
- DES studies on the genital tract.
- Papers on DES lawsuits.
- DES videos and posts tagged DES, the DES-exposed, DES victims.
175 thoughts on “Raising DES Awareness”
I think one reason the DES cause is unnoticed in the general public is that most of us are older. The drug has not been given since 1971, making the youngest of us in their 40’s. There really hasn’t been anything new regarding the research in the last 15-20 years. I’m glad I found this page, I’ve been out of the DES loop for years but I still am having problems from this drug. Its the gift that keeps on giving.
I’m not sure what DES is. I grew up in South America and perhaps we didn’t get that drug? What would it have been given for?
Hi Monica, DES is the first synthetic man made female sex hormone (oestrogen) prescribed for public use mainly between 1938 and 1971 (but not limited to those years). DES exposure occurred through diverse sources, such as medical treatment for certain conditions, including breast and prostate cancers. During more than 40 years, DES was primarily given to pregnant women under the mistaken belief it would reduce the risk of pregnancy complications and losses. It was prescribed mainly in the USA, Europe and Australia. No sure about South America but I will try to find out. I hope this helps. For more information about DES please visit Diethylstilbestrol
I know it’s been a number of years sence your post but if you could connect with me or let me know how I can connect with you that would be great. My grandmother was a W.A.C and recieved the DES shot with her last 4 pregnancys. She passed away in the 80’s of Cancer. The last 3 years we have lost 1 Aunt, an Uncle and most recently our Mother to a rare Cancer(Nuroendoctrin Small Cell Carcinoma ). As of today our Aunt (the last surviving pregnancy to have recieved the shot) has been diagnosed with Cancer as well. Not all of us kids have been tested for T-Cell markers but I have and it’s not good. Every one who has passed have been in their early to mid 50’s. We just all need answers and at 33 I now find myself getting things ready for my children in case I pass in my 50’s. Please help.
I have sent you an email 🙂
I am a DES Daughter. Luckily, my mother told me about it and how important it was to get my annual paps. Luckily, again, I did, because when I was 20 my pap was normal and at 21 I was already stage 1 and had a huge cone biopsy.
It never occurred to me that there could be other health issues. Shame on me. At least now I know about the breast cancer issues in women over 50. Breast cancer already runs in my family so now I know to be super-diligent.
I’m having some post-menopausal (early menopause, of course) issues that point to possible problems of the C-word type and on a whim decided to see if there were any connection or else I would have never found your blog.
Are there any support groups that you’re aware of?
Yes there are some official DES support groups
On Facebook, a friendly group for interaction with DES-exposed
I am not sure where to post here so I figured I would reply to your comment since it is the most recent. I was discussing my medical issues with coworkers (nurses) and recalled that I am a DES daughter, not that I’ve forgotten just that it’s not something I think about frequently. So needles to say we went researching. Here’s my story. First off my mom just died a few years ago of cancer. I was born five weeks premature. I had my son at 29. At 30 I had several papa that came back abnormal and part of my cervix was removed. In my early 40 I had severe bleeding and had an ablation and a benign lump removed from my breast. Currently I suffer from fibroids. Other medical issues consisted of over 10 years of kidney stones and surgery. I also have a tumor in my inner ear sitting on the acoustic nerve being monitored by neuro-oncology. My concern now is with my son who is considered third generation who was diagnosed with type1 diabetes and an immune deficiency disorder (CVID) unfortunately in researching the past few days third generation boys are left out of this loop, but I see on other sites people are writing about immune deficiencies in their third generation children. I do believe we are getting forgotten about and these drug companies are getting away with the damages that have been done do to our moms receiving this drug. Thank you for letting me vent here. Because I truly believe no one understands our story.
Thank you for sharing your thoughts Dawn
Hi DES Daughter.
I am one too. I need to put this out there to everyone. My 6 year old son has a malignant kidney tumor called Wilms Tumor. He just had surgery to have the mass removed and his right kidney. He now has to do 27 weeks of chemo and radiation sine it is in his lymph node. I am so angry and sad that he has to go through this! Keep your boys safe by telling your doctors to check on this.
Really sorry to hear what you and your son are going through.
Based on your comment, I did a quick search and found this study, that I shall republish asap.
My grandson has similar issues. Is there anyone else out there with children or grandchildren with kidney issues? It is extremely rare so if there are a lot of us it could be from exposure.
Hello from your newest follower!
Nice blog and keep up the great work you’re doing.
Thank you for following my blog! I am glad you like it.
Glad to see a good cause being championed through the web 2.0. Keep up the great work with the blog!
You learn something new every day.
Great website – just discovered it! Thanks for posting the link to my video.
Thank you Susan for your kind comment!You’re such an inspiration to so many DES daughters. Thank you for your courage and positive attitude.
Not sure that my first comment went anywhere, so I will try again. Thank you for this needed, informative site. I have been searching for a DES resource for sometime and I am so glad that I found this.
My mother, who was a nurse, told me from day one that I was a DES baby, and that I should inform all of my doctors of this. Over the years, the usual response to this was “what is that, I’ve never heard of DES” . Big surprise…..
I have learned to become my own best advocate when it comes to my health or the health of a loved one. Ask as many questions as you have, do not let anybody tell you that you are crazy or wrong in what your body is telling you. And research, research, research until you get a satisfactory answer.
God bless and keep up the good work. Many will benefit from your perserverance and knowledge. “Endeavor to perservere!” ( my favorite line from an old movie). I hope to be able to contribute to your effort in some way.
Klee65, a DES baby
Thank you for your kind words and support! It is so shocking that DES exposed individuals have to educate doctors! Please continue to spread DES awareness. In order for people to care, they have to know.
Firstly I would like say what thank you for all the hard work that has created this wealth of information.
Secondly, I had a c-section in 2004, my healthy baby boy was born and I was immediately informed that I had a unicornuate uterus, it all made sense, I had had an odd pregnancy and I was all lop-sided and my baby was breach. I had a further scan to check my kidneys, I have 2.
My mother was prescribed morning sickness pills in 1969 whilst pregnant with me, we do not know the name of what she was given. Could it have been DES?
I had no idea about DES until today! Thank you DES Daughter for sharing in such a professional way on Empire Avenue. I am intrigued and interested in your cause as well as taking notes for your excellent Social Media skills!
Thank you for your kind words Dyann! and thank you for your interest in the DES tragedy.
DES Daughter here. I am please to see people writing about this issue. I found out I was a DES daughter in 1976 because my mother read an article in a woman’s magazine. She took me to the doctor, I had a biopsy which turned out to be bad news. After much surgery, radiation and a recurrence, I am healthy and happy after 36 years. I remain very grateful for people who continue to get the word out and for those wonderful people who have supported me along the way. The story is not over. We do not know what the future holds for this group of men and women. As we get older we arrive in an age group where people have a higher incidents of cancer by virtue of being older. What will happen to the DES population as we age? My hope is we will be healthy, happy and wise. With wisdom comes the skill of being our own health advocates. It is our responsibility to keep our healthcare provider aware of our DES exposure. It is unfortunate and perhaps fixable that the interns and residents in our teaching hospitals have no clue what DES exposure means. We can not rely on them to know what to look for. We must rely on the DES Action Community and read all we can about this life long issue.
Keep up the good work.
Vickie, Thanks for mounting this campaign. I was born in 1955, and have sisters born in 1958 and 1961. Our parents are now deceased, and we don’t know if we might be “victims.” I had completely forgotten about DES, since it hasn’t been a significant media topic since the 70s.
I’m glad to have found this website. I’m 34 years old and just learning about this. I’m not sure if I’m a DES daughter or granddaughter, but believe that the possibility is there. My mother passed away at the age of 51 from breast cancer unexpectedly (there was no family history). I have three sisters, three of us have had children with very complicated pregnancies. We have lost pregnancies and have been told we have incompetent cervixes. I vaguely remember someone saying this could be due to some exposure to a medication given while my mother was pregnant but she passed away 10 years ago and there is no way of finding out for sure. I’m concerned because what I have read seems that if this happened my daughter is at risk as well as my nieces of having complications. There is so much information I’m just really lost as to where to start.
Great work! Keep spreading the word!
You are awesome and I am so proud to be your friend! Thank you for all you do for women all over the world!!
I am a 44 year old DES daughter. I am so glad I found this website. I was diagnosed with breast cancer 3 days ago. I had no family history and I m fairly healthy. I have been researching and reading as much as I could possibly take in. I wanted to know the “why”. I believe I found it today. I have known for years I was a DES daughter. I have had minor complications over the years I contribute to this drug exposure. I never connected my newly diagnosis of breast cancer to the drug. I am not sure why. I will talking with my oncologist on Monday . Prayers to all of the DES daughters out there.
Hi Lynda, I am so sorry to read you’ve been diagnosed with breast cancer. Please seek support from your local DES Action group. They will be able to provide you with detailed information about DES and breast cancer. They can give you advice and put you in contact with other DES daughters. I’m 41 now and I’m scared about what the future holds for me and my daughters. DES creeps in your life without warning and the more I know about this drug and its long term health effects the scarier it gets. All my thoughts are with you in this difficult time. Please do not hesitate to get in touch and take care of yourself.
Hello, I am so glad to have had the opportunity to be able to be a part of this community. I am a DES daughter, with DES complications involving my children. Myself having had a complete hysterectomy at the age of 23, with continueing problems. As like some of the other ones who have told a doctor that they are a DES daughter, I too have been looked at like I am crazy, and asked “whats that?”. This information needs to be given to our medical community, they need to be aware of it, and become more educated in the treatment, support and continued care this drug demands.
Hi Lisa, thank you for taking the time to leave a comment on my blog and for sharing your DES story. It is soooo shocking that doctors are making us feel like we are paranoid and crazy when it is doctors who years ago prescribed a harmful drug to pregnant women …. who are the crazy ones there? Ok they didn’t know at the time but surely now that they know doctors should do everything they can to care and support DES victims …!!! I guess the problem is that even now doctors don’t know and more often than not DES daughters are more knowledgeable on DES issues and health complications than doctors are …
its a lovely cause ,we all should work and be involved the best possible way ,we can ,thank you so much
you are welcome !!
Great post DES Daughter. Thank you and good luck.
Your doing a great public service!!!
Ozarksagent Steve Mattiso.
It’s been so amazing watching your activism boom. You’re such an inspiration. 🙂
j ruth kelly
Thanks Ruth 🙂
A touch with DES daughter, influence the knowledge, with more information, can be used as tips, to follow more than first aid to prevent the losses, well in advance.
My name is April Danann, and I am a DES Daughter. All the usual signs and symptoms including a bout with breast cancer in my early 30’s, multiple miscarriages and bicornate uterus. However, there is a rainbow in all of this – I have learned to take exquisite care of my body, brought it back to good health and have 2 healthy children (probably a miracle in itself!).
For many years I have refused to ‘take’ any form of drug (kind of gun-shy when it comes to meds, after all that is what caused these problems), choosing instead to treat myself and my family with natural methods, good diet, exercise, herbs and an inner belief in my body’s ability to heal itself.
My greatest achievement has been the free birth of my daughter a few years ago – it’s quite a story, but all down to DES and what we are now told about our bodies. If you would like to have a read about it, I posted the entire birth story on my blog (scroll down past the Food Revolution Article LOL). Perhaps, it will inspire others who are wanting children, trying to get their health back and not getting any answers.
All the very best health to you!
Thanks a lot for sharing your story April 🙂
I just published a new post with your comment and I hope it will bring some extra visits to your blog !
Thank you kindly….it’s funny how this is a part of who we are as women and people, and perhaps something that has also made us stronger (or more determined!!) in all the ways we care for ourselves. Thank you for all your effort for DES daughters.
My pleasure, we’ll stay in touch, and sorry to reply so late. FYI, my DES story is on our initial website: introduction and doctors. Also a rainbow 🙂
Thanks for the tip.
You are welcome Michelle
Thank you for all your considerable work on DES, for piercing the silence with your advocacy and getting the word out about the generational effects of this horrible drug. It is wonderful to read the comments here – how your site and information is helping many affected people discover the truth.
Thanks Mary 🙂
Thumbs up! 🙂
I was born in Belgium in 1980 where DES was still being prescribed. My mother was prescribed DES while she was pregnant with me. I have had nothing but complications ever since. I am currently 32 years old and had very much trouble becoming pregnant. Now that I am 5 1/2 months pregnant with my first baby, I was labeled as a high-risk pregnancy. I am a little bit worried that my ob/gyn is not that familiar with the complications and risks of DES. His response when I told him I was a DES baby is “you should research DES on the internet so you are familiar with everything.” I feel like I know more about it than he does. Does anyone know a good ob/gyn that is familiar with DES in the NJ/NYC area? I am experiencing a lot of pain, some bleeding, and was put on bed-rest for the duration of the pregnancy. Thanks!
Leeza, there is a doctor on Park Ave, I believe his name is Mel Levine. He is with Columbia Pres. And is an expert in DES. I’m not sure if he is still practicing as I saw him in the 80s. Also try north shore medical center, they have a lot of research on DES that comes from that hospital. I believe it is where the DES action committee is. Also in NJ, there is my ob/gyn who studied at North Shore, his name is Ronnie Bochner. He saved my life when I had cervical and vaginal cancer. He is located in Kendal Park. I highly recommend him. Long story, but he is the one who sent me to Dr. Levine and to see so done at LIJ-Long Island Jewish Medical Center, which I believe is now North Shore some thi g or other. Good luck.
Thank you Diane! Park Ave in the city right? I will google… thanks again 🙂
Hi Leeza, I’m glad Diane was able to give you some recommendations for doctors familiar with DES, so many aren’t. I can’t believe DES was still being prescribed in Belgium until 1980 and most likely beyond! This is shocking! In June 2011, the National French Agency for the Safety of Health Products (AFSSAPS) published a document aimed at health professionals. The publication emphasizes the gynecologists and obstetricians’ crucial role in recognizing DES exposure, informing their patients about its consequences and referring them to specialists for adequate care and monitoring. It’s available to download in French and English here: DES Update. I suggest you print a copy to give to your Ob/Gyn. You can also contact DES Action USA for help and support. I wish you all the best with your pregnancy. Take it easy and good luck! Keeping my fingers crossed for you.
The consequences of this tragedy will continue to play out for years. The really scary thing to me is that most of the affected people have no idea of the source of their problems. The pharma industry is motivated to keep this information sealed. I wonder what could be done to help notify folks who were prescribed this drug.
Thanks for giving this incredibly important topic a ‘face’ and blog. My wife’s mother was prescribed DES without her knowledge in 1953. When my wife was 35 her annual smear picked up cancer cells which were dealt with by laser. Does anyone know if compensation is possible, because whenever we can we must try and rein in the irresponsible greed of any pharmacutical company that thinks it can put an improperly tested drug on the market, and secondly and even more inportant is there any information about possible effects passed onto the grand-daughters of DES reipients?
Jason, I had a similar situation when I was 32 years old, way back in the mid 80’s. at the time I was told that I was “alive” and if it came to court my entire life would be suspect and would never get any monetary compensation. Things may have changed, but again, the bottom line is I was alive. Good luck! I’d love to know the outcome.
What you were told was utterly false. An attorney overnight shipped me documents to sign, completed, they were returned. Everything happened via mail, no court appearance, no history taking, no disclosure. The drug companies (18 total) paid out because they knew/know they did wrong and have reaped (odd how close to ‘raped’ this sounds) trillions of dollars in literal blood-money profits from the distribution of this drug. And also false is the idea that DES was pulled from the market. Instead the FDA approved of its use in animal husbandry. Making its way into the food chain, cows were known to become literal nymphomaniacs as a result of eating the chemicals.
Also, miscarriages were not the only supposed ailment to be treated with DES – my mother’s medical notes indicated – “for headaches” – one sure way to cover the doctor’s behind!
Yes, monetary compensation is available. One thing you will have to do is to get on the Herbst Registry to identify yourself. But that is as far as it goes for public anything. Plus, monies obtained are non-taxable. So, a suggestion is to look for attorneys in the New York City area. This information can also be obtained from the Herbst registry. Good luck, contact me if you need more of an assist.
P.S. The first thing you will absolutely need to do is to obtain your mother’s medical records spanning before and after her pregnancy with you. If you have siblings you will want to do the same thing for them.
My sister, older by three years, had no exposure to DES. However, the year before my mother was to become pregnant with me, her physician gave her DES months before she was to try again. And then months into her pregnancy with me again, sealing my fate.
She always claimed she ‘wanted me’, but I am sure her physician tempted her to consider abortion because she was in extremis, losing vast quantities of blood throughout the course of ‘my’ pregnancy with her. Subsequent pregnancies, he gave her more DES and she lost every one of those children – tragedy after tragedy all because of corporate greed. She did not need DES, she had no history of miscarriages (before DES, but definitely after DES), and required nothing but aspirin for her ‘headaches’ – so, if you believe in the almighty doctor-as-god spiel that the AMA likes to portray themselves as being, well you have my sympathies.
My mother was so physically and emotionally spent, she displayed classic depressive symptoms (post-partum), avoiding me as a newborn, and relinquished nearly all of my care to her mother and father.
DES did more than give me two cancers, it destroyed my childhood and health.
For other areas of concern: immune system suppression, brain structure and function (males more like females, females more like males), primary sexual organs malformations… Check out the website for the HERS foundation before you consider hysterectomization.
Sorry, I had forgotten how passionate I am about this topic.
I really admire the enormous work you do – AND how persistent you do it!!! Proud to be your friend 🙂
Thanks Lene 🙂
I too appreciate the mutual quest we are all on. I found out I was a DES Daughter when I was 15 when the bloody horror story started. I have taken enough birth control pills for 5 people’s lifetime to “solve” the hemorrhaging. My gyn told me that it was either the birth control pills or a hysterectomy….but he would lose his license for giving a 15 year old the only surgical “solution” available. From 15-25 years old, I dealt with the fall-out including a D&C. Then, well, it went into an odd form of remission. There were years without periods, thought I was “oops pregnant” a few times. Now I am 48 and know well that being sterile (never wanted kids) and the miracle of surviving stage 4 Hodgkin’s Lymphoma cancer, that we never know what life will hold.
I am a living target for all the “female cancers” and have made peace with that. I have the most compassion for the DES Son. I met one for the first time a year ago. Hearing he and his wife’s story, about not being able to have children, made me see the other side of the mystery. We are a generation that has the most reproductive challenges ever. My hunch is that if all of those people going through in-vitro and the like, knew they could be or were DES children, our collective voices would be very loud.
I can only imagine what a DES menopause will be like. I coming up on that wonderful time of life and believe that it couldn’t be any more difficult than what I have already been through. Maybe, I won’t have one at all? Rock On!
This is one blog that I am proud to follow. I am a guy who lost both his right limbs to wrong medication at the age of 3 and I know and fully identify with what is said here. If there is anyway that I can help to spread the word, it would be an honor to do so.
Thank you Shakthi 🙂
Great web site, I only wish there was still someone in the Uk who could co-ordinate all the info. I am a DES daughter who has had 2 ectopic pregnancys and has had to fight to get a colposcopy every year to ensure I keep well. It appears that this is no longer possible due to internal constrictions and my specialist is investigating what to do next (hysterectomy has been mentioned) 😦
Really need to find someone who can advise further in the UK any suggestions/contacts would be appreciated.
Would also be interested to know how many DES daughters are in the UK at present
Thanks for your comment and kind words. I’m glad you like our website. It’s really upsetting that DES Action UK had to cease their activity. Lack of funding and support, I guess. The DES issues are completely ignored in the UK not only by health professionals but also by the media and the government yet it is estimated that the total number of people exposed to Diethylstilbestrol in the UK may be as high as 300,000. I will email you a list of UK medical contacts who have shown an interest in DES health issues. The list is very short unfortunately …
Dear DES Daughter and Tribe,
I too am one of the 300,000 unfortunates in the UK. Currently still angry that I’ve been kept in the dark for so long….I am 42 years old. I have only discovered this week that I am a DES daughter – this was despite the better part of 28 years asking various GP’s and consultants etc if any of the myriad of gynae issues I experienced had anything to do with the cocktail of 60 hormone tablets which my mum took every day to keep me……..
I have been too busy during the bulk of my fertile years trying to fight cervical cancer to be able to seriously pursue my infertility (I was once prescribed Clomid and I’m so glad I didn’t take them now!): and besides, even if I had caught pregnant, I was casually told by the gynaecologist who broke through my womb at 27, during a botched stenosis dilation that I was lucky because I would never carry to full term anyway…..
Like Tribe (I know how you feel- Good luck in your fight), I find I have to ‘justify’ a colposcopy smear every year- I have been ‘accidentally’ removed from the list for colposcopy smears twice in the last five years and have had to fight to get back on it…… any ‘normal’ smear is impossible and agonising now anyway (no GP or GP Nurse in the country can find my cervix, since it is only a small hole in the vaginal wall!!)
Both my brothers were a consequence of DES too: one has had cysts on his testicles already….. I stumbled across a research paper this week stating that in the area of the country where we came from originally, only 8 DES offspring were identified by 1999…..were we in that research paper? Doubtful, since it’s not even in any of our medical records! What a cover up!!! Disgraceful!!!
I too would appreciate the list of contacts in the UK if possible?
Gwyyne Lyons is Director of ChemTrust who will be able to help you on the problems of DES in the UK and would be happy to help you.
She is well versed on the previous UK victims of DES. She will also be able to tell you of the previous UK organiser of DES who wrote a book on DES/experiences. Hope this answers some of your questions.
Val Williams founder member of the Association for Childrend damaged by Hormone Prenancy Test in early 1978. Primodos was equivalent to 40 contraceptive pills which many mothers bled after taking Primodos or other hormone pregnancy test drugs used in this coultry until the final ban in 1978 or msscarried or born stillbirth or gave birth to babies with abnormalites as a result of Primodos, a synthetic oestrogen. The sister drug to DES
Thank you very much Valerie
Wow! What a great service! You really are dedicated.
Have just found out why our family over two generations are so poorly and all related to my mothers taking of this drug.
I have four children from 45 to twenty one.
We are all very ill with endocrine related damage by this man made female hormone and effective for more medical intervention/experimentation and may effect the future genes of our family forever and ruining the future evolution of my families genes otherwise would be perfect genes, this crime is not/will not be appeased by apologies and is wholly unforgivable.
They must not be allowed to continue to get away with these nasty treatments, it is a crime against humanity and the right to enjoy life.
Very interesting blog.I appreciate the research and the efforts you put to write this post.New technology is changing our lives.Thank you for liking my posts.
Hi Dom, I’ve been following your blog for sometime and I think it is really cool that you are consistent and always brings out the best news to support your cause. I’ve nominated you for the Sunshine Award and please check my latest blog post.
Really appreciated Sunish, thank you 🙂
Kate, what if I can’t get my mothers records. She has passed away, and so has her doctor. When I spoke to him in the 80’s he told me that the records were all lost in a fire.(?). Not sure I believe that. At this point I don’t even remember his name, so all is lost at this point. But I have had SO many problems from this drug. Also, for anyone in the US, I know there is a “stain” test that was done on women born during the time that DES was given. At least in the NY-NJ area. So I think that the vast majority of us should have been diagnosed and know if we have been exposed or not. All of my friends, exposed or not all know. But thank you for the information on the Herbst report. First I heard of it. Back in the 80’s I was seen by his partner, Dr.Richard, I think was his name. Not sure of the spelling. He was at the time at Columbia in NYC, head of gyn pathology. My story is endless, I could go one forever! Thanks for the information! Dianne
I do not know. But let’s think of it this way for a minute. First get in touch with the registry and get signed on. Ask as many questions of them that you can think of.
Did your mother ever speak to you about this medication? Or maybe she spoke to other female relatives about taking this med…? (Just some questions to stimulate your thinking, I am not in search of answers, but there are often hints tucked away in one’s memory, so ask your subconscious to get busy)
Did she have a history of actual miscarriages after a certain point in her marriage? The reason for this – my mother was on the search for the Holy Grail of Catholicism – the male heir, the sign of a perfect marriage. She was determined to produce a living male heir if it nearly killed her trying. See what I mean – there is some kind of history that precedes the efforts performed in such earnest.
Um, I know nothing about a ‘stain test’ and seeing that I lived in the Midwest up until my early 30’s and then moved West I have no first hand knowledge about the stain test even from friends or word of mouth.
How can I share the attorney’s name in this forum? I am reluctant at this point without getting in touch with her first. I am assuming that there is an alternate route as to how this can be handled. I will get in touch with her office in NYC and see what I can discover.
I just revisited your original post. You were responding to a post about a ‘pap smear’ – the specific type of cancer cell is clearly recognizable, this may be the way into this matter.
Let me get back with you…
Kate, that you so much for the information. I tried to find the registry but was not able to find it. Perhaps you can send me the link. If you want to email me information, either use my Facebook account or firstname.lastname@example.org. Fortunately, I know a great deal about my mothers history at east on this subject. My father is still alive and of course he know what I know, but he is quite elderly and has dementia . I know that they had at least 12 miscarriages/still births, etc. and she was on the DES her entire pregnancies. Another one bound and determined to have a baby. She also took it after I was born, had a miscarriage or two before my brother was born. And he was a premie. Not sure what he knows about the situation. But I have a whole litiney of issues. I’m 57 and still have hormone imbalances.
But what ever information you can pass on, I would greatly appreciate. Thanks much.
I see that something I said may be misconstrued… there is history to be taken by the attorney that represents you, but not attorneys from the other side (drug companies). Let me be clear about this. Your attorney will definitely have to ask and should receive from you the very best information possible pertaining to your health history and that of your mother.
I am informed for reasons that are entirely practical – to avoid recommendations regarding any ‘legal’ ideas. What I wrote of were my personal experiences from a period of time when ‘things were being handled differently.’ Much has changed. Now, cases are going to court and with this route, depositions from both sides do occur. So, I retract my former statement – yes, both sides can and do depose, have the right to depose, and so, that is that. I sincerely apologize for the inconvenience. Since this is not a legal forum, take what has been said with a grain of salt…
Kate, the stain test, I believe, was th vinegar swabbing . It was done way up in the cervix. It you were DES exposed the cervix turned a different color. I could be wrong on the information. It’s been so many many years. I also remember it being called a “red dye” test. As far as I know, all GYNs in the NY/NJ area did it routinely. I found out I was DES when I was 16 but I already knew my mother had taken stuff when she was pregnant . Maybe it was done because I always went to major medical teaching hospitals. But I know that 2 of the 3 GYNs of mine did the test. Not sure of the 2nd one, he was an idiot to begin with!
Dianne, I had the ‘stain test’ at about 19 (1977) before a scheduled conization of my cervix. My poor MD splashed the stain inside me and my entire cervix and vaginal wall reacted. She woke me and told me I had to see a specialist, the president of a gynecological oncologist association from South Africa was practicing in my local hospital.
On his 1st visit he swung the curtain open around my bed and was in the company of a dozen residents. The MD said ‘this is very rare and I’d like my residents to each take a colposcopy. I would have probably agreed wholeheartedly if his beside manner entered and he spoke with me alone be exposing me to all ‘the boys’ – that was a long, long appointment.
Dr. So Africa told me that I’d be the subject of his next journal article and prescribed 5FU (it has a far longer name and is used to treat skin cancer. He had me insert two tubes (from yeast infection dispensers in the old days) twice a day. Gravity caused the cream to travel down from my upper vaginal wall down to my labia, urinary tract, clitoris, etc. and BURNED IT ALL OFF. The worst pain of my life and I’ve been through a lot.
11 months later, I ‘hooked up’ (those were the years when sex didn’t kill you) with a coworker’s brother who built decks and fences. I was terrified to be alone with him until finally he stripped. And OMG, deck and fence building is a very good form of weight lifting. And he never noticed a spot of skin or and I never felt a lick of pain. It was just a long year. The MD terrified me. My sister is a physician, so I don’t hold MD’s on pedestals, but this guy brought his own.
Thank God they found the 5fu cream worked equally well without the overdose I had. I’m 56 and there hasn’t be one abnormal sell phone from a colposcope or PAP exam. The South African MD without a bedside manner was so egocentric he was sure I would be restored to perfect health.
Pardon any typos, I’m not proofreading today.
Love to all of you
Now we’re connected! I think it’s great what you do, I hadn’t heard of any of this before, so that’s at least +1 for reach 🙂
As a founder of The Association for Children Damaged by Hormone Pregnancy Testing, my research has proven so much information of the the Primodos used soley as a pregnancy test 1956-until the ban in 1978. It is a synthetic oestrogen you could say a sister oestrogen to the DES with multiple abnormalities and death to the unborn child. Much information was obained by spending days at the Kew Government archives with its history of reactions to drugs and pregnant woment going back over fifty years. The present Committee of Safety & Medicines then were fully aware of the synthetic oestrogen tragedy to the foetus but did little to warn the public until many years. The Senior Medical Ofiicer of this governing committee, Dr W Innman even wrote a supplementary report to say Primodos was not harmful to the foetus. How then were we to rely on the trust of individuals employed by the government to look after the health issues of the public betraying us in its line of duty to act for the drug company then, Schering Chemical now Bayer. This German drug company were part of all German Pharma companies of a Cartel, The IG Farben who rebuilt Auschwitch where all hormone mimicking drugs were researched on prisoners, and face a barrage of concerns to life as we know today. Primodos is destined to be the biggest Medical and Legal Scandal of the 21st Century. Yasmin Querishi MP has taken up our cause which will eventually unravel the horrors of all hormone drugs in the last 50 years. Yasmin will be meeting victims of Primodos with the Secretary of State to instigate a independent public when parliament next resume.
DES and all victims of synthetic oestrogens are unravelling the can of worms on coporate negligence, and a corrupt UK government.who have failed so many lives over the last fifty years, including victims of the contraceptive pill which Primodos was eqivalent to over 80 pills in one dose to diagnose a pregnancy. We now have evidence to suggest the pill and Primodos and most likely DES, were not adeqately tested. In fact Proffessor Briggs has now admitted to forging research studies for the Pill and Primodos, two weeks before he died in 2012. This means there are untold millions of women taking the pill, believe they are taking a pill which was tested as safe to use.
Many thanks for your contribution
Bonjour Domino, Thank you for following my blog For a Better Earth, where I found you in my followers list.
Thank you very much for exposing DES, for providing information and education. I am a DES daughter born in Argentina in the late 1950s. Unaware of my condition, we went through difficult times trying to become pregnant. Finally, after a long time, came the IVF treatments and a hysterosalpingogram revealed my condition, I was devastated.
The point is, women who may be DES have the right to verify this, yet a hysterosalpingogram will not be granted per se, only through a medical necessity. This needs to change. A woman who does not plan to become pregnant will never know she is DES and still have a higher risk of cervical cancer. After age 50, doctors recommend a PAP every three years, while DES daughters must have it every year.
Much awareness and education is needed and you are providing a great service. Thank you.
Thanks for your kind words Carmen. Despite a miscarriage and the knowledge that I had been exposed to DES, I was refused a hysterosalpingogram in the UK and advised to try for another pregnancy. It would have been a waste of time and an emotional roller coaster! An hysterosalpingogram performed in France confirmed a DES uterus and other complications. I agree 100% with you that all women who know or suspect DES exposure should receive appropriate preventive care, proper diagnosis and treatment before going through the painful process of unsuccessful pregnancies and fertility treatment. I’m glad our blog helps with educating the general public, providing information and a platform for exchange and communication for DES families. Thanks again for your kind words of support.
I admire the valuable information you offer in your message. a great article written with great hard work
keep up your work.
will try to… thanks
Hi, I am a DES daughter.I am a healthy 52 year old woman. Because of the DES pill my Mom took while pregnant with me, I have recently had a radical hysterectomy and lymph node Dissection. Due to cancer they found in my uterus, from this DES pill. I am healing, but am still high risk for getting vaginal cancer. My doctors are wonderful.. I am being closely monitored for that and everything that goes along with this clear cell carcinoma. My sister who is 9 years younger than myself is being closely monitored also. She had a scraping done to her cervix and uterus and she also has checked positive for clear cell caused by this terrible pill. Her and I have two healthy children…. all by C-sections because we could not deliver normally. I could go on and on about the complications we both had during our pregnancies. I would just like to say thank you for this blog. Anyone who suspects their Mother took this pill should investigate and be very pro active. It causes cancer. The Oncologist said “I don’t fit the bill” but when my pathology came back, we knew it was the DES that caused this. I hope my story has helped someone else before she has to go through what I just did.
thank you very much for sharing your story Brenda
best wishes of recovery to you and to your sister
No.. thank you for this blog. 🙂
I am a DES daughter – exposed to the DES estrogen in utero. I have had complications over the years I didn’t realize were related to this. I was born in 1962. My mother took DES because she had had 4 miscarriages between 1958 and 1962, and she was told this drug would help her carry to full term. My mother died of breast cancer in 1978. I had a T-shaped uterus, and was born with just one labia. I never had regular periods. I had a full hysterectomy (plus ovaries) last year due to uterine fibroids. My right ovary was 5-6X larger than the average ovary, and my fibroids were also large. I have had a white discharge for over a year. Recently my doctor prescribed antibiotics, thinking it was an infection. A pap she performed confirmed no bacteria – therefore no infection – therefore no need for antibiotics. I am concerned about vaginal cancer and an ability to have it treated quickly. Although rare, I understand that there is an increased incidence of clear cell adrenomcarcinoma in DES daughters. I am looking for information / support…..Thank you…
Thank you Heather. You will find more information with our NCBI posts, via our tags, and/or using the search box (top right corner). Here are lots links for updates and support via official DES action groups and more 🙂
You have so much information here, thank you for all of this great information!
thank you !
Wow, I have never heard about DES Thank you for taking this on as a cause. Thank you also for the like on my blog yesterday. I hope you will return again soon and oftern. I will read to learn more about the horrible legacy of DES! Namaste. . . ..
Brilliant work Awesome Network for a Genuine Cause, all the best!
Many thanks Rami 🙂
Domino, I have nominated your blog for the Awesome Blog Content Award (ABC) award. Congratulations!.If your blog accepts awards, the rules are here
many thanks Carmen
I just like the helpful information you supply to your articles. I’ll bookmark your weblog and test again here regularly. I’m slightly sure I will be told lots of new stuff right here!
Best of luck for the following!
My mother told me when I was about 13, 14 that she had taken DES and that she had just found out that it could cause cervical cancer, she whisked me off to an OBGYN at the Army hospital (awful experience). I had my first Pap test and was told to keep up with it forever. I got pregnant at 28, gave birth to a girl with a cleft palate and diformaties caused by “amniotic bands” . I had preeclampsia while pregnant and had an emergency C-section. Fast forward. At 53 I was diagnosed with bilateral breast cancer and underwent a double mastectomy. My daughter just recently gave birth to my first grandson. She had a very difficult pregnancy, preeclampsia and had an emergency C-section resulting in my grandson spending 2 weeks in the NICU. Coincidence? I have just recently heard about possible links. When diagnosed with breast cancer I mentioned the DES but it fell on deaf ears.
Thank you Louise for your comment and for sharing your personal experience. Your story will sound familiar to many DES daughters who have experienced the same health issues and faced the same dismissal. We hope your grandson and daughter are both well. Animal studies suggest that prenatal exposure to Diethylstilbestrol causes epigenetic changes that may be transmitted to several generations. You will find more information about all the effects of DES exposure here and here. Some 3rd generation DES Grand Sons are affected by hypospadias.
I AM A CLINICAL NEGLIGENCE LAWYER IN THE UK . I have been approached by a lady who has had the most horrendous time as a result of DES . as you say there is very little known about this in the UK and a real reluctance to take cases such as this due to the expense involved ! would you pass me your list of experts who have expressed an interest in this condition as that may be a start for us .
regards Paula Bridge
Dear Paula, Thanks for your comment and for contacting us. I’ve emailed you a list of medical contacts in the UK who have shown an interest in the DES health issues. I would also suggest you contact Mr Aaron Levine, A US lawyer expert in DES court trials. He traveled to the UK in 2012 to call on UK DES Daughters to claim compensation. I’m sure DES Action Groups in the US, France, Netherlands and Australia would also be able to provide you with some guidance and advice. I hope you find this information helpful. I wish you and the lady who contacted you all the best. Don’t hesitate to contact us if you need any further information or if we can be of any assistance.
Hi I am a DES daughter and would like advice on claiming compensation for exposure. I have known about this since I was 14 years of age and living with the threat of cancer over the years has been hard to bear. I have had annual colposcopy since finding out, and now also have annual mammograms. I have had a rare bladder cancer. The worst part for me is having an incompetent cervix. My first baby boy was born at 36 weeks, second baby boy at 31 weeks, and I lost my perfect little baby Rosie mid-trimester. I cannot get over this loss and feel so sad. I should have been offered a cervical suture. I often think of her and know that the loss of my perfect little baby was due to my incompetent cervix. I will never get over this. A further pregnancy (twins) resulted in miscarriage. My sister is also a DES daughter and has had fertility problems, miscarriages, and has recently had breast cancer. We both often feel tired and have muscular and bone pains.This has gone on for years – we both get the same symptoms. Our mum feels guilty that something she took that was supposed to prevent miscarriage has made us like this.
Hi, I had clear Cell endromitial cancer 10 yrs ago when I was 50 and also suffered several miscarriages in my twenties, I am now wondering if my mother took DES? Not sure I could find out now but I am worried about the implications for my daughter.
thanks for sharing your testimonial Anne
I had a hysterectomy almost 40 years ago because of persistent what was then called Class 4 dysplasia. Sadly I was young and really didn’t ask my fatherly 75 year old doctor to fully explain the findings. I do remember him exitedly telling me how all the other doctors available were called to see my abnormalities and using the phrase “your kind of cancer” but also saying it wasn’t cancer. My mother had already told me she took DES after the birth of my daughter, by ceasarian, in 1976 when the deformity of my uterous was first found. I also have other deformities such as a double duct to one kidney and the uterous, in addition to being mishapen, was also 45 degrees retrodisplaced.
They continued doing PAP smears for years and they were all normal, Approximately 10 years ago I was told I no longer needed the PAPs. When I moved and changed my family doctor last month, the intake questionaire asked if my mother took DES. Because I answered yes they did a PAP which was abnormal. I was referred to a gynocologist who removed a polyp and did another PAP. I had been experiencing pain which has diminished after the removal of the polyp. She is only vaguely familiar with DES if at all. She seemed to dismis my explanation of the history and does not believe that the polyp was painful. She had the original PAP tested for HPV even though I tried to explain that the kind of cancer I was concerned about wouldn’t be related to HPV. Test was negative. Her diognosis is menopause – I still have one ovary.
The lab results on the polyp were “atypical” however the first pathologist felt the need to refer it to a second lab for another opinion. Why? I don’t know. The results were not cancer but not normal. Second HPV test also negative.
Follow up is another PAP in 6 months. Should I be doing something else? Hard to believe this has all come up again after all these years.
Hi Darlene, it drives me mad to read how DES continues to be dismissed by the medical profession despite all the studies about its devastating side effects. Thanks for sharing your story and the ordeal you’re going through. My recommendation would be to contact your local DES Action Group for professional advice and support. Unfortunately, with DES you never know when it’s going to knock at your door again … As DES daugters age more medical concerns arise and these are most likely linked to DES exposure. Take care of yourself and keep pestering your doctors about DES! Thanks again for your comment.
I am a DES Daughter, age 51. Trying to find a knowledgeable doctor is like banging your head on a brick wall. I stopped going to the gyno 7 years ago, it was to difficult. I’ve had 3 surgeries for endometrios, the last resulting in a complete hysterectomy. My regular doctor wanted me to get pregnant, said that would cure it, despite 2 previous miscarriages. A 1st trimester & a 2nd trimester. I had 1 child previously. I’ve also had pre-cancerous cells & been thru the routine at the oncology center. With every problem, I ask, is this due to DES? And I’m told no. My mother took it with my brother & me. We’ve both had problems. Now my daughter is expecting her 1st child & had to go IVF. Big question, how sure are the researchers that DEs leaves the mother’s body in a timely fashion? My mother had 4 children between 1962 & 1965. My younger sister has had problems, & my sister-in-law wants to know is there a connection between DES and Autism, due to the number of autism cases in the family. No one else in the extended family has experienced these issues.
Hi Leslie, thanks for your comment and for sharing your testimonial. Your health issues and concerns / question resonate with many DES daughters who are experiencing similar problems. If you contact your local DES group they should be able to provide you with a list of doctors who have shown an interest in DES issues and who should be able to answer your questions with insigth. Thanks again for your comment.
I think it might be good if everyone injured, damaged, or harmed by pharmaceutical industry joined forces…
I have joined few other groups, mainly on Facebook and I agree we reach more people by sharing each other news…
Feel free to join this Health News community on Google+ and get involved !
My OB/GYN is retiring, so I tried a new one last year. She actually said to me, “Most people with DES exposure have died out by now.” Needless to say, I’m still looking for a new OB/GYN. NPs are out because I had one who took 13 slides when doing my PAP “just to be safe.” I’m in Sullivan County in NY. Any suggestions?
Please contact DES Action USA, they can provide you with a list of OB / Gyn who have been recommended by DES daughters. Thanks for contacting us via our blog.
Hi – i am still not sure – but everything seems to point to DES exposure. I was born in England in 1972 and it was still being used then. My mother had some bleeding when she was in the early days of pregnancy, her doctor prescribed her “these little blue pills” – we can’t find retrieve the medical records. I have a t-shaped uterus, had 4 failed IVF treatments (completely blocked fallopian tubes, early ovarian aging) and have also been told i have salpingitis isthmaca nordosa. I have had problems for a long time and have now been told i’m on the brink of menopause. My periods, mood swings have been nuts and after scares of uterine cancer, ectopic pregancy – etc, my doctor has inserted a merina IUD and put me on estradiol – 2 days in and i’m freaking out. I have never been able to take the effects of birth control (tried the nuva ring as well) and am feeling very anxious right now. Going tomorrow to have it out – any thoughts on whether DES daughters react differently to progesterone?? or an options in dealing with perimenopause. I also took misoprostol the other night before the insertion and had a “rare reaction” with severe pain and vomitting. I am so fed up – just want to curl up sometimes and not get out of bed. A funny story, i saw a naturopath a few years ago and was telling him about DES – he told me his father had invented it at McGill University and also worked to get it off the shelves – talk about irony..
Hi Kate, DES is a real nightmare for those who have been exposed. Your testimonial just shows the diversity of the DES side effects and how it continues to affect us, DES Daughters, as we age. DES daughters need to take their exposure to DES into account when they decide on a method of contraception. You should discuss your options with a doctor who understands that you are a DES daughter. Unfortunately there are very few doctors in the UK who are DES aware and most GPs completely dismiss the issue. As a general rule, DES daughters who have changes in the shape of their uterus should avoid using an IUD even more so the progesterone-releasing IUDs. Regarding menopause, as far as I know, studies have not been done specifically concerning DES exposure and Hormone Replacement Therapy use. But since DES Daughters were awash in a synthetic hormone before birth, and knowing of current studies on HRT dangers, it is prudent to use the lowest dose for the shortest length of time possible. I would recommend you contact DES Action USA as they will be able to provide you with professional advice about suitable birth control options for DES daughters and best perimenopause / menopause tips that don’t include HRT. Thanks for posting a comment and sharing your ordeal with us.
Just added featured site news for friends and yours is featured on ACE NEWS SERVICES 2014
hope that is OK
Many thanks for your support Ian and really glad you like my posts 🙂
Best regards 🙂
Hi, I am a new follower. I am in my late 50’s and have had a few physical issues over the years directly related to the DES. I have come upon something new and wondered if you or any of your followers have had any hip related issues? Seems my hips and thigh bones are mis-shappen and are causing tears in the Labrum (cartilage) of the hip. I have had 2 previous surgeries due to malformed internal organs. Just curious and would like to hear from anyone else having these concerns.Thanks,
Thanks for visiting and for commenting Elen.
Regarding “skeleton”, here are studies from 1995 and 1996. Regarding “cartilage” here is a study from 2012.
You might find similar studies on this page
Hope this will hep you a bit
My mother took the shots. She had 3 miscarriages in 12 years. I’m scared to death now. Im done having children. 2 girls but 4 miscarriages of my own. I fear cancer.
Thanks for sharing your DES story. A study published in 2011 suggests lifetime risk of adverse health outcomes for DES Daughters. DES truly is a never ending story. If you haven’t done it yet, it’s important that you inform your doctor that you’ve been exposed to DES to ensure you receive appropriate care and monitoring. You should contact your local DES Action Group for a list of doctors who are knowledgeable about the DES health issues.
I am a DES daughter, and although my medical issues have been there they have been less of a concern than the psychosexual ones I have experienced my entire life. While I have kept these hidden, the more I have been reading the more I am curious if there could indeed be a connection.
Thanks for posting a comment and sharing your DES story. A few studies suggest that people exposed to DES in utero have an increased risk of experiencing psychological disorders including depression. Several published studies in the medical literature on psycho-neuro-endocrinology have also examined the hypothesis that prenatal exposure to estrogens (including Diethylstilbestrol) may cause significant developmental impact on sexual differentiation of the brain, and on subsequent behavioural and gender identity development in exposed males and females. There is significant evidence linking prenatal hormonal influences on gender identity and transsexual development. You can find more information about these studies on this post, and this post. Check-out our resources for more studies.
From your sister drug Primodos. Hormone pregnancy test that ruined so many lthousands of lives 1953-78, I send my latest news from Bayer Stockholders Conference 27/05/15 where I was forbidden to speak in English in my presentation speech. Each time I spoke in English the board switched of the microphone. In desperation to speak to the Stockholders present I eventually obtained a translator to present my speech in German. What transpired from this was Roland Holtz, Medical Ethics champion of medical causes in Germany with vast medical negligence and who once worked for a drug company for 23 yrs, has agreed to work alongside myself on this outburst which Bayer Pharma violated EU Legislation by preventing me as a EU citizen to speak in my native language. Letters have now been sent to Bayer Management from Roland and myself though Bayer has three years to hang out their response. One alternative is to involve in media coverage to put pressure on Bayer to respond. After all I am part of the EU aged seventy two years, which takes a lot of courage to stand up to Bayer Management, just because I wanted to speak directly to tell the story on Primodos to their Stockholders in English. An Interpreture would have reduced my presentation to over half of its content. I intend going to the Supreme Court in Brussel,s if they do not want to recognise EU law legislated to protect its citizens.
Thanks for your comment. We admire your courage and determination to stand up to big Pharma’s pressure and abuses. We wish you all the best with your future endeavors. Keep us posted.
I first found I may be a third generation DES granddaughter when I was going through fertility treatments. I just so happen to be working for a very educated professor who informed me about the drug to prevent miscarriages that was used in the thirties. I did some family investigating which proved to be very difficult because medical records were not adequately kept back when my grandmother carried children. Unfortunately, I am unable to ask my grandmother due to her unexpected death in 1971. I asked my mother and aunts. They suspected my grandmother was given DES to prevent miscarriages due to her miscarriages of my four uncles. My mother is the youngest of three living females and four deceased brothers which were all still born. My mothers had little difficulty getting pregnant at a very early age. I am the middle of three siblings. I have an older sister and younger brother. My mother found out she had cervical cancer at age 28 while pregnant with my brother. She carried my brother to term and had a radical hysterectomy soon after his birth. I married at age 29 and soon after we decided to start a family. We attempted to conceive for several years before seeking fertility therapy. We attempting IVF five times which proved to be unsuccessful to this day. During my therapy treatments is when I found out about DES. I spoke with my mother and aunts about our family fertility history. My oldest aunt had four miscarriages before having a single son. My middle aunt had a daughter and son. My mother has two daughters and a son. My male cousins had no difficulty conceiving children. My female cousin had difficulty conceiving a daughter which lent to her only child. My sister and I are both infertile. My brother has not yet conceived a child by choice. I strongly suspect that due to my mother being the youngest child and exposed to an extensive amount of DES has had a third generation effect on myself and my sister. This effect has totally destroyed my life. Knowing that DES has had such an effect on my life doesn’t make it any easier to accept. I wish there were more third generational studies to prove this drug has effect more than just daughters. I do not think that professionals have taken this drugs effect seriously enough to discover how many people have been effects past the daughters. While I was going through fertility therapy I had connected with my doctor. She had been working in her field for several years and was shocked at the increase in females seeking fertility therapy. However, she was unable to answer the questions as to why the increase. If only someone would investigate the answer may be discovered and lives may not be destroyed.
Thank you for your blog!!!
Thank you so much for adding such an important comment to our blog and for sharing your personal DES story. Studies of the third generation are really important because DES might be associated with epigenetic changes, yet very little is known and being studied about the effects on the 3rd generation. The effects on DES daughters and sons are being ignored too. By sharing your DES journey as a 3rd generation victim, you contribute to painting the true picture of the devastating effects that DES continues to have years after exposure, destroying people lives and hopes along the way. Thanks again!
I wonder if there are others here approaching menopause and wondering about the effects. I was born in 1966 to a Mum on DES, she had me tested in my 20’s for cervical problems but as you say GP’s have no interest in this now. I would be very interested in hearing from any other daughters currently going through onset of menopause and the problems there. Or with daughters (3rd generation) experiencing pregnancy problems as my own daughter is just now.
Thanks for your comment and for sharing your DES journey. Our aim with DES Daughter Network is to provide a platform for individuals like you affected by DES (or other drug scandals) to connect and share their knowledge and experience. We encourage our readers to reply to comments or post their own to keep the communication going about DES and help break the wall of silence and feeling of isolation commonly felt by DES daughters, mothers and sons.
bev I am 58 I hve 4 children my twin sister had none and had a cancer at 25 and had no chidren I have just now after 8 years after menopause have bleeding does this mean I could have cancer our mother took des in asutalia in 1957
Thanks for your comment Bev. Make sure you inform your doctor that your mother took DES and we recommend that you get in touch with DES Australia for support and professional advice.
Does anyone know whether DES grandaughters have reproductive abnormalities? Both my daighters have endometriosis, one has a T-shaped uterus, and one has just had a Hydatid Molar pregnancy. My mother took DES when carrying me, it has affected me and both my sisters and now I think it may have carried on to my children.
I am still publishing DES-related researches as I find them but hundreds of them are already listed here (you’ll need t scroll to see them all).
For example this 2013 study includes a chapter about the 3rd generation.
I’m new to the site and I have just found out (through my own investigations) that i am a DES daughter. I’m wondering if there is any special medical group or body that I should contact to inform. I live in the NE of England and have yet to have the opportunity to discuss DES and what it may mean for me. I am under a gynaecologist for abnormal cells in my cervix again and he won’t even consider DES. I have also asked Drs on my panel and each one says it’s a specialist area and you need to discuss it with your gynaecologist. I just want a member of the medical profession to sit down and talk to me about it. Any ideas who I should contact?
I have published this new post: Medical Contacts in the UK for the DES Exposed.
I hope you will find it useful.
I am a Des daughter. I am now 64 yrs of age. I discovered by accident in 1983 that I was a Des daughter. I have had a number of investigations done in my younger years as to why I had trouble conceiving etc. A professor off gynaecology was responsible for these investigations, his conclusions were that I was a ‘text book case’. Whilst I have reached maturity, and am in pretty good health, I still have many concerns especially regarding my only child a daughter. I have informed every doctor I have ever seen about my exposure, some have heard about DES but, others haven’t. I feel that most of us are entering into ‘old age’ and the DES factor is becoming a distant memory for the medical fraternity but, not for us. I among others still have daily reminders one way or another.
Thank you for sharing your story and thoughts with our readers Cheryle
Hi, I am a DES daughter. My mom told both my older sister, born in 1947, and myself that we were DES babies. My uterus was malformed and I was never able to bring a child to term. After 3 miscarriages, at the age of 29, I decided to have my tubes tied. This was devastating as I really wanted children. Both of us 2-3 times during our early twenties had to have cryosurgery due to pre-cancerous cells on our cervix. I would LOVE to sue the drug company that denied me of the ability to bear my own children. I was fortunate to find a man who understood the issue, and loved me enough to marry me knowing that I would not be able to give him children. The ability to have children has affected my life in ways you might imagine. I went through severe depression for years over this issue. Now at 67, I have serious envy when I see other women my age, playing with their grandchildren.
Hi Toni and sorry to hear about all your issues related to DES.
I hope to have finished this page in few months time.
I try to add one post each day, and starting from the older DES cases (1977).
It should help you and others when considering lawsuits…
Hi! I believe I am a DES daughter. My mother passed away in 2000 from Ovarian Cancer. I am a bi-lateral amputee above the knees, at the age of two. Born with veins that did not circulate the blood, they were afraid of gangrene setting in. I have osteoporosis, fibro., born with three fused discs., left hip has it’s own socket, cycles have always been heavy (needed depo-provera to control them and then an ablation), PCOS, endometriosis, and scoliosis. Would be interested in hearing your thoughts. Thank you!!
Our thoughts ? We admire your courage and thank you for sharing your story with our readers. We hope the studies we republish can answer some of the questions you might have. We hope there are days that can still bring you some ray of light or joy sometimes. Sending you love and best wishes.
Hello everyone! My name is Melissa — I’m 42yrs old and was born in Los Angeles, CA in January of 1975. I’ve had 4 miscarriages: 2 were ectopic pregnancies, while the other were unknown losses. After one of my last failed pregnancies, my husband and I decided to see a fertility specialist to find out all of our options. Our specialist referred us to a Reproductive Endocrinologist who performed a hysterosalpingogram aka HSG test on me. (NOTE: The HSG test is a radiology procedure in which a radiographic contrast (dye) is injected into the uterine cavity through the vagina and cervix.) During this procedure, the doctor discovered that I have a T-shaped uterus. Until this day, I never even heard of a T-shaped uterus. But within days of my examination, I was told by my fertility specialist that it’s a type of uterine malformation wherein the uterus is shaped resembling the letter “T” instead of the standard pyramid-like shape. I was also informed that my T-shaped uterus along with the miscarriages and ectopic pregnancies I’ve suffered through were caused by a drug called DES that was given to my mother while pregnant with me. Additionally, since I was already in my 40’s still trying to have my 1st baby while the majority of the DES-exposed daughters were already at the end of their child-bearing years, it was very rare to find a woman with a T-shaped uterus trying to get pregnant. I have now seen 5 doctors so far (e.g. Fertility Specialist, High Risk Specialist, Radiologist & 2 OBGYN’s) to receive their expert opinions. Without reviewing each other’s medical notes, all 5 doctors came up with the same conclusion — my mom was given DES while pregnant with me which caused the T-shaped uterus along with all the other side effects.
I started researching DES and it brought tears to my eyes to see all of my symptoms listed under the reproductive problems this drug can cause. A T-shaped uterus, infertility, Ectopic Pregnancies, Miscarriages, Depression…all were present.
I am aware that DES Daughters are defined as women born between 1938 and 1971 who were exposed to DES before birth (in the womb). However, I disagree. I am living proof of this. Research shows that a 1974-Wall Street journal article reports 11,000 U.S. prescriptions were written for DES in 1974 “to guard against miscarriage,” despite 1971 FDA warning. Keep in mind that I was born in January 1975, so the drug was given to my mom in 1974. Additionally, on February 5, 1975, the FDA ordered 25 mg and 100 mg tablets of DES withdrawn, effective February 18, 1975. I was born on January 18, 1975 — EXACTLY A MONTH BEFORE THE FDA ORDERED THE WITHDRAWAL! Furthermore, this timeline is confirmed on the 3-page letter from the FDA dated February 22, 2011, that was sent to US Senator John Kerry (D-MA) and US Senator Scott Brown (R-MA) in response to their joint letter about a DES apology. The FDA’s letter did not contain an official apology from the federal government for the DES drug disaster. However, it acknowledged the devastating health consequences of DES.
I sought advice regarding the pharmaceutical company’s legal responsibilities but was told that since the FDA had issued a Drug Bulletin advising physicians to stop prescribing DES to pregnant women because it was linked to a rare vaginal cancer in female offspring, the pharmaceutical company may not be liable since my mother was given this drug during pregnancy in 1974. Yet, a drug warning label wasn’t required until 1975. I was wondering if any other DES daughters out there were born in or after 1972 were able to seek legal representation due to this harmful drug. Any advice would be greatly appreciated. Thank you.
First, regarding legal action, take a look at this page which links to cases and related papers. There was a class action of 53 DES Daughters in the U.S. in 2013, and there are still actions going on in 2017 in Europe…
Secondly, I think you are confused about few things:
– all what the FDA did, in 1971, was to issue a contra-indication for use in pregnancy. that does not mean all doctors stopped prescribing immediately… for example, some European countries used it in pregnancy until 1977… and for the record, DES is still used today for other purposes in many countries…
– yes a T-shaped uterus is specific to DES exposure (only). Recently, in France, a DES daughter who did not have her mother’s initial prescription records, used her T-shape uterus as “proof” to win her case… so I think the date a DES mother was prescribed the drug becomes non-important, once a 2nd generation exposed-woman has a T-shape uterus which becomes “the” non-argumentable living proof of exposure anyway…
Thank you for your response. I appreciate your insight. Please bear with me as I am new to this topic. Not to mention, I am still in shock having just learned that I will never be able to give birth to a child. I’m also fearful for what other side effects this drug may cause in the future. Would you happen to know a lawyer that is still handling these cases? The location doesn’t matter. Thank you again for your help.
Regarding giving up ref having your own child, there are ways for a surgical correction of a T-shaped uterus which proof successful. I recommend you check our posts tagged T-shaped and our (latest) published DES and pregnancy studies.
Regarding legal action advice, best is to contact your official local DES action group to see what and who they recommend.
Hope this helps, best wishes
So here’s a question for anyone who is listening…just found out that my mother, who had three sets of twins and two singles (one on top, three sets of which I’m in the third set, and one single on the bottom) took DES with her second set of twins after her first set of twins died. My older sister, who is DES affected, knew about this along with my mother. My question is this…how common is this deception and how does one approach this subject with a sibling (as my mother has an advanced case of dementia). Any advice would be helpful and directions to a friendly source would be appreciated!
Hi Julia and thank you for sharing your concerns with our readers.
Obviously, people affected by DES deal with it in different ways, depending upon their personality and how they have been affected.
If you use Facebook, you should consider joining this group for community support.
There are official DES action groups that provide advice and support.
My mom has told me most of my life that my grandmother took this drug, and that it caused problems for her, and might cause problems for me. None of my doctors have ever known what it is, and I was just reading about the amount of grandaughters of DES that had heart defects. Mine wasn’t found until I was 29, and had had 2 strokes. I am now 38 and apparently starting to go through menopause early. I feel like I may never catch a break, I also often wish I was a boy, and have always been a tomboy, but have slowly come to like who I am and just be a tomboy. Now that I am going through the change early I wish so much that I was a boy, I didn’t get enough time to become accustomed to my body and now it is changing again. Will the awful things from this drug my grandmother took to protect my mother ever stop? Is there any help I don’t know of? The facts and research are really long and confusing and I would love to know someone in NC who I could talk to, just to be able to compare tales. Thanks, everyone.
Thank you for sharing your thoughts and story with our readers, Violet.
If you use Facebook, this group of DES Sons and Daughters might be of help.
Thanks for sharing, 🙂
You are welcome, thanks for visiting Ramz !
My mother in-law took DES when she was pregnant with her daughter. Her daughter started cutting herself, had an eating disorder, then became a narcissistic psychopath with no empathy toward others. She turned into a different person in her 20’s. I wonder if it was caused by the DES. ?
Sorry to hear that. There are lots of studies about DES and psychological health effects.
I am looking for information/research regarding the repercussions to endocrine functions for DES Daughters.
Did you check this page > DES studies > and each links ? Those are studies listed by categories and republished.
Am I considered a DES daughter if my mom took DES a couple years before she tried conceiving me? She passed away at the age of 47 years back in 1990, so we don’t know for sure. However, now that I am her age (47 years old), my dad told me she didn’t take DES while trying to conceive me but rather a couple years prior. I had always considered myself a DES daughter but now I’m unsure. Thank you so much!