DES Daughter Network

DES Daughter Network blog image of dandelion seeds

Spreading DES awareness on Social Media Networks is like blowing dandelion seeds

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 features and displays the social media networks of existing DES groups and individuals who have an online social media presence aimed at raising DES awareness.  This new 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.

Why a new blog?

Around the world, thousands, maybe millions of people are totally unaware that they were exposed to Diethylstilbestrol DES Diethylstilbestrol DES Google+ Page icon, 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.

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122 Comments

  1. Dianne Senko

     /  07/10/2011

    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.

    Reply
  2. Monica Hayden

     /  11/10/2011

    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?
    Monica Hayden

    Reply
    • 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

      Reply
  3. dj Goddessa

     /  31/10/2011

    Hello from your newest follower!
    Nice blog and keep up the great work you’re doing.

    Love,
    Me

    Reply
  4. dustinryen

     /  02/12/2011

    Glad to see a good cause being championed through the web 2.0. Keep up the great work with the blog!
    Dustin Ryen

    Reply
  5. @CommercialScott

     /  13/12/2011

    You learn something new every day.
    PenguinsPark

    Reply
  6. Great website – just discovered it! Thanks for posting the link to my video.

    Reply
    • 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.

      Reply
  7. 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.

    Sincerely,

    Klee65, a DES baby

    Reply
    • 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.

      Reply
  8. Nicola Pharoah

     /  19/03/2012

    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?
    Thank you.

    Reply
  9. 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!

    Reply
  10. Dandridge Vickie

     /  29/04/2012

    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 Dandridge

    Reply
  11. Jmaes R. Wirshing

     /  07/05/2012

    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.

    Reply
  12. Kelly Bobbitt

     /  17/05/2012

    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.

    Reply
  13. Greg Harvey

     /  03/06/2012

    Great work! Keep spreading the word!
    Greg Harvey

    Reply
  14. painspeaks

     /  11/06/2012

    You are awesome and I am so proud to be your friend! Thank you for all you do for women all over the world!!
    painspeaks

    Reply
  15. Lynda

     /  17/06/2012

    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.
    Lynda D.

    Reply
    • 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.

      Reply
  16. lisa

     /  18/06/2012

    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.
    lisa

    Reply
    • 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 …

      Reply
  17. rezaahmed

     /  21/06/2012

    its a lovely cause ,we all should work and be involved the best possible way ,we can ,thank you so much
    rezaahmed

    Reply
  18. Android Market

     /  05/07/2012

    Great post DES Daughter. Thank you and good luck.
    Android Market

    Reply
  19. Ozarksagent Steve Mattison

     /  10/07/2012

    Your doing a great public service!!!
    Ozarksagent Steve Mattiso.

    Reply
  20. jruthkelly

     /  30/07/2012

    It’s been so amazing watching your activism boom. You’re such an inspiration. :)
    j ruth kelly

    Reply
  21. veenaga

     /  31/07/2012

    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.
    veenaga

    Reply
  22. April Danann

     /  17/08/2012

    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!
    April

    Reply
    • 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 !
      cheers

      Reply
      • April Danann

         /  09/09/2013

        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.
        April

      • 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 :)
        see you

  23. mgilstrap

     /  16/09/2012

    Thanks for the tip.
    Michelle

    Reply
  24. maryehaight

     /  01/10/2012

    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.

    Reply
  25. George J Lloyd

     /  17/11/2012

    Thumbs up! :-)
    George

    Reply
  26. Leeza

     /  22/11/2012

    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!

    Reply
    • Dianne Senko

       /  23/11/2012

      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.

      Reply
      • Leeza

         /  23/11/2012

        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.

      Reply
  27. Harold Gardner

     /  03/01/2013

    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.
    Harold

    Reply
  28. Jason

     /  27/01/2013

    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?
    Thank you

    Reply
    • Dianne Senko

       /  28/01/2013

      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.

      Dianne

      Reply
      • Kate Kobylarz

         /  02/06/2013

        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.

      • Kate Kobylarz

         /  02/06/2013

        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.

  29. lenejyttehansen

     /  28/02/2013

    I really admire the enormous work you do – AND how persistent you do it!!! Proud to be your friend :)
    Lene

    Reply
  30. Angelica Holiday

     /  07/03/2013

    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!

    Blessings, Angelica

    Reply
  31. shakthi2013

     /  15/03/2013

    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.

    ~Shakthi

    Reply
  32. Tribe

     /  23/03/2013

    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

    Reply
    • 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 …

      Reply
      • UK 'DES Daughter'

         /  03/04/2013

        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?

  33. cookiecuckoo

     /  17/04/2013

    Wow! What a great service! You really are dedicated.
    Kevin

    Reply
  34. E.fin

     /  27/04/2013

    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.

    Reply
  35. 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.
    Best wishes.jalal

    Reply
  36. Sunish Sebastian

     /  04/05/2013

    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.
    Sunish

    Reply
  37. Dianne Senko

     /  03/06/2013

    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

    Reply
    • Kate Kobylarz

       /  04/06/2013

      Dear, Diane,

      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…

      Reply
      • Dianne Senko

         /  05/06/2013

        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 diannesenko@yahoo.com. 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.
        Dianne

  38. Kate Kobylarz

     /  04/06/2013

    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.

    Reply
    • Kate Kobylarz

       /  06/06/2013

      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…

      Reply
  39. Dianne Senko

     /  05/06/2013

    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!

    Reply
  40. :)

     /  08/07/2013

    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 :)
    n21s.wordpress

    Reply
  41. valivalalerie

     /  30/07/2013

    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.
    contact

    Reply
  42. Carmen Mandel

     /  31/08/2013

    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.
    Carmen

    Reply
    • 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.

      Reply
  43. Afira Liaquet

     /  09/09/2013

    I admire the valuable information you offer in your message. a great article written with great hard work
    keep up your work.
    Afira

    Reply
  44. Brenda

     /  09/10/2013

    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.

    Reply
    • thank you very much for sharing your story Brenda
      best wishes of recovery to you and to your sister

      Reply
  45. Brenda

     /  09/10/2013

    No.. thank you for this blog. :)

    Reply
  46. heather sargent

     /  05/11/2013

    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…

    Reply
    • 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 :)

      Reply
  47. Kavalonthatsme

     /  14/11/2013

    You have so much information here, thank you for all of this great information!
    Kavalonthatsme

    Reply
  48. annetbell

     /  19/11/2013

    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. . . ..
    anne

    Reply
  49. Rami Kantari

     /  08/12/2013

    Brilliant work Awesome Network for a Genuine Cause, all the best!
    Katakiti

    Reply
  50. Carmen Mandel

     /  17/12/2013

    Domino, I have nominated your blog for the Awesome Blog Content Award (ABC) award. Congratulations!.If your blog accepts awards, the rules are here
    Carmen

    Reply
  51. 2

     /  13/02/2014

    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!
    Henry

    Reply
  52. Louise

     /  14/02/2014

    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.

    Reply
    • 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.
      Best wishes

      Reply
  53. paula bridge

     /  20/02/2014

    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

    Reply
    • 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.
      Best regards

      Reply
    • Janet

       /  15/05/2014

      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.

      Reply
  54. Anne Lindsay-Smith

     /  05/04/2014

    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.
    Anne

    Reply
  55. Darlene Keebler

     /  17/05/2014

    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.

    Reply
    • 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.

      Reply
  56. Leslie

     /  07/06/2014

    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.

    Reply
    • 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.

      Reply
  57. truthman30

     /  24/06/2014

    I think it might be good if everyone injured, damaged, or harmed by pharmaceutical industry joined forces…
    truthman30.wordpress

    Reply
  58. Lise Kennedy

     /  07/07/2014

    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?

    Reply
    • 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.

      Reply
  59. Kate Hayer

     /  13/08/2014

    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..

    Reply
    • 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.

      Reply

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