My DES Daughter Journey – Introduction

My DES journey started with a miscarriage. When I started bleeding after 11 weeks of pregnancy,  I vaguely remembered what my mum told me when I was a teenage girl about the DES drug she had been prescribed when she was pregnant which may prevent me from having normal pregnancies or even worst from knowing the joy of being a mum. When I miscarried,  this information kept somewhere in the back of my mind came back at once.

Being diagnosed DES daughter meant I would most likely never be able to experience the joys of pregnancy and motherhood. I may never give a daughter or son to my husband; grandchildren to my parents and in-laws. Additionally, I may be under higher risks of developing other health problems such as cancer. I was promised to live the rest of my live with fear, stress, anxiety and guilt to name just a few of the many emotions that went trough my mind the day I was first called .

Making UK doctors and consultants accept to further investigate the reason why I miscarried considering my DES exposure was a lost battle. I was told that it was highly unlikely that I would be able to receive treatment on the NHS (National Health Service) for many months; I should be pragmatic and try for another baby. Since I knew I had been DES exposed, I couldn’t possibly take the risk and put myself through this pain again.

So I returned to France to have first a hysterosalpingography (an infertility test that shows whether both fallopian tubes are open and whether the shape of the uterine cavity is normal) and then an hysteroscopy and laparoscopy (procedure that allows a surgeon to examine the fallopian tubes, ovaries and womb to diagnose and treat a condition). I was very lucky to have both examinations performed by eminent specialists aware of the consequences of DES exposure. The results confirmed a septate and T-shape uterus – uterine malformation typical of daughters whom mothers had been prescribed diethylstilbestrol during their pregnancy.

My womb was like two tiny rooms with a wall in between. No baby would have enough room to grow if the septum was not removed to make a proper home for him to develop and spend 9 months of his life. Professor René Frydman who performed the operation removed the septum and changed my uterus to a room big enough for a baby to develop even though there would still be a high risk of complications and miscarriage due to its shape and other DES related injuries.

Pr. Frydman, obstetrician-gyneacologist and head of the “Male-Couple-Embryo-Children Hospital“, gave birth in 1982 in Clamart to the first French test-tube baby, Amandine, less than four years after the birth of the world’s first baby conceived by IVF, Louise Brown in July 25, 1978 in Great Britain.

When I returned to the UK with the green light to try again for a baby, the battle intensified with health care providers to make them accept to monitor my DES pregnancy and treat me like any DES daughter should be treated.

So I desperately turned to DES Action UK and Réseau DES France for help and support. This is when my DES journey as a DES daughter really started, even though my mum had warned me when I was just a teenage girl about this wonder drug and its consequences. All her fears and what I thought was just paranoia from a loving and caring DES mother were justified. There was no more doubt. I was, I am a DES daughter.

The journey started with a miscarriage and an operation. Now my DES journey is taking a new start with my Journal of a DES Daughter Blog and Diethylstilbestrol facebook page. In between, many tears, fears, many hopes, successes, and three beautiful daughters… The journey continues as concerns for my daughters (DES third generation) arise…

17 Replies to “My DES Daughter Journey – Introduction”

  1. Je suis la maman de “Domino”…
    j’ai vécu dans les années 70…
    La peur, l’angoisse de perdre mon bébé….
    Alors, oui, j’ai appliqué la prescription médicale et pris le Distilbène!!!!
    J’ai prévenu, alerté Domino sur les risques DES
    J’étais avec elle le jour ou après examen, le diagnostic est tombé “utérus DES” “fille DES”
    J’ai pleuré avec elle…
    … et puis je me suis effacée….
    … j’étais coupable!
    Je l’ai laissé dire son immense chagrin à son mari et vivre cette désolante aventure avec lui
    Mon problème était devenu leur problème, quel horrible cadeau de mariage!
    Je suis désolée!
    Elle a eu cette chance de pouvoir être soignée en France, en service spécialisé de l’hôpital Antoine Béclère
    3 petites princesses ont pu ainsi voir le jour
    Craintes, Colère, Angoisse, Catastrophe physique, morale ” J’accuse le DES d’en être responsable”
    Il faut prévenir, lutter contre l’ignorance, se battre pour toutes celles et ceux qui ont , auront à souffrir encore des conséquences de ce médicament désastreux
    C’est ce que fait, aujourd’hui Domino “Ma Fille”
    Ce sont des excuses et des remerciements que je lui adresse par l’intermédiaire de “son journal DES”
    Josselyne

    1. Merci, Josselyne, pour ces mots qui sonnent juste, qui témoignent, ouvrent un dialogue et qui donnent sens à ce vécu DES – en faire quelque chose. Votre main est tendue vers d’autres partout dans le monde – “se battre pour toutes celles et tous ceux qui ont et auront encore à souffrir des conséquences du DES”, c’est l’antidote de l’indifférence. Cela nous concerne toutes, tous – we are all concerned, all round the world. Nous ne sommes pas coupables mais victimes, mais sans victimisation. Votre parole met debout.
      Merci – avec amitié
      Pam

  2. I haven’t had complications from DES – yet. I was born in 1968. My mom told me when I was 13. Since then I like you have lived in fear of problems and cancer. I think one of the reasons my husband and I waited so long to have a child is because of the DES. I was lucky I gave birth to a little girl at age 38 in Oct. 2006. My OB didn’t not believe me when I told him I was a DES daughter – he told me that wasn’t possible that I was too young. I told him I AM and my Mom told me when I was 13. I don’t think anything special was done. I do have high blood pressure and of course advance maternal age so from week 20 – 40 I had to be monitored 2 times a week. They tried to get me to have the baby early – I would not give in. Ultimately I did have to be induced but did give birth vaginally 2 days after due date. Husband and I decided NOT to try for a 2nd child for a variety of reasons, DES being one of them. I wonder now about all the implications the drug will have on our little girl. thanks for writing this blog.
    Katherine

    1. Your doctor’s an idiot. S/he should know DES was prescribed in the USA til 1970, and abroad, who knows?
      Anonymous

  3. I didn’t find out about my t-shaped, septate uterus until after my hysterectomy, which I finally had at age 38, having suffered endometrosis, I think since my first period at age nine.

    I too am without children.

    Hang in there, sister.
    Anonymous

  4. I am a DES daughter. I am 55 yrs old. Had cervical cancer at age 26 due to DES, breast cancer at age 39, probable due to DES and have numerous health issues which I believe are related to DES. I have hypothyroid which they can’t get under control. My parotid glands, pituitary gland, adrenal glands (adrenal insufficiency) and thyroid gland do not produce hormones like they are suppose to. I accidently found about that my cortisol level was low (and probably had been for yrs) and thus adrenal insufficiency. From there the doctor ran other hormone levels and all of them are either low or high. I believe this synthetic hormone DES is the cause… perhaps I just want a cause and believe that. Most doctors do not check cortisol levels and in fact, most doctors do not recognize adrenal insufficiency as a disease. Here in the USA, one of our past Presidents (John F. Kennedy) almost died from adrenal insufficiency (Addison’s disease) when he went into adrenal crisis.

    I created a Facebook page for people to share and perhaps together we can all learn more and be great supports for each other. Thank you so much for this website and I am going to post it on this FB page.
    Jeanette

    1. Jeanette –

      I too am 55 & a DES daughter. My parents lived in the Boston area where DES was widely prescribed when I was conceived. My mother had a miscarriage before she became pregnant with me and her Dr. put her on DES the entire 1st trimester.
      I too seem to have thyroid issues, the classic T-shaped uterus & had an ectopic pregnancy in 1990. I was not able to get pregnant, even trying IVF.
      Dealing with DES has been akin to living a nightmare, not knowing what health issues may present themselves next. I try not to think about it and hope all will be well.

      Debra

  5. I am 62 – my mother told me about her being prescribed DES in the late 40’s and early 50’s – by the time she told me, I had lost my first child – (sepsis from pneumonia and congenital heart failure) I did carry her full term. And, my second pregnancy I almost lost my son – I started bleeding early into my 3rd month and had to be off my feet the entire pregnancy. He came out relatively unscathed – except he has a touch of scoliosis. After that I miscarried and miscarried, so I gave up. Ironically, both of my brothers and their wives had no children. My son has no children (except for two beautiful step-sons from his marriage). I cannot help but wonder if there is some connection and some truth to the DES information that is out there. Coincidence?
    Cheryl

  6. I am 58. I was told about DES when I was in my 20’s. When I first started having periods they were horribly painful. It didn’t seem normal to me to be in so much pain. When I was 20 I had a miscarriage. My husband and I were devastated. The following year I had my daughter. But, she was born 8 weeks prematurely due to an incompetent cervix. She had to spend over a week in NICU. I didn’t get to hold her until she was a week old. My little daughter had to undergo painful procedures while she was in NICU. I didn’t get pregnant again, even with IVF. I had a hysterosalpingogram and was told my cervix was stenotic and nearly closed (thus contributing to the painful periods) and I had an abnormally small uterus. Classic DES. Prior to being told about the cervix, in my late 20’s I was told I had dysplasia of the vagina and classic mosiac pattern on the tissue as well. Yearly Paps were a nightmare. The colposcopy I had was painful. Due to my small T shaped uterus I started developing fibroids (also from DES) and bleeding a lot. After much thought I had a hysterectomy when I was 45. Fast forward to 2008. A large cyst was found on my ovary. The other ovary was (surprise?) abnormally small and shrunken. I had them both removed via a long abdominal incision because the doc didn’t know if he was dealing with cancer at the time. It was a benign cyst. In the fall of 2008, six months after my ovarian surgery and 10 years after the hysterectomy, I was diagnosed with breast cancer. I am the only one in my family on both sides to have this. I had to undergo chemotherapy and a bilateral mastectomy. My body is a battleground of scars thanks to DES. I am worried now about what will happen to my daughter! How could anyone give this drug to pregnant women, knowing what it could do? It has been proven years ago that it didn’t stop miscarriage. My mother would have had me just fine w/o that horrible drug. Now I have to live with cancer and all that goes with that.
    Suzanne

  7. I am 40 and was told of my DES exposure as a teenager. I had cervical dysplasia which led to to colposcopies, biopsies, cryosurgeries, etc. I definitely believe my DES exposure led to the cervical dysplasia. After two cryosurgeries (at 19 and 24) I had normal paps and moved along with my life.
    At 33 I got married and started trying to get pregnant at 34. Needless to say, it was difficult – nothing was working. I started testing after 6 months due to my age. I laid on the table crying during the HSG as the technician tried every catheter to get into my cervix. She confirmed that my uterus looked small. I told EVERY DOCTOR (3) for the first 4-5 years about my DES exposure and I was dismissed. I had 5 IUI’s (intrauterine inseminations), 4 attempted hysteroscopies (although doctors were only able to get through my cervix two of those times), and 2 IVFs and nothing worked. In addition, I was terrified of another catheter touching my cervix as every procedure involved a catheter and was agony. On my two IVFs, I did the embryo transfers under anesthesia to not have to go through that. After those two IVF’s did not work I asked my doctor if I ever do get pregnant, would I possibly miscarry or have a pre-term baby due to my DES exposure? He looked me right in the eye and patronizingly said “let’s get your pregnant first”. The years of infertilility were torture. The loss that comes with infertility affected my jobs, my marriage, and basically all of my relationships. There are few words to describe that feeling of dispair and failure.
    We finally went to a very well-known fertility doctor in Colorado who took one look at me and said “you have the shortest cervix and smallest uterus I have ever seen.” And this is the doctor who is the last stop for many infertile women all over the world! He said my uterus was tiny and t-shaped and I had VERY little chance of ever getting pregnant. If I had, I would most likely have lost the baby. My husband and I both started bawling upon receiving that news. FINALLY, someone validated our suspicions and told us it WAS the DES. He said the only chance of us having a biological child was through a gestational carrier. After more agonizing we decided we owed it to ourselves to try. After the second IVF our gestational carrier is currently pregnant with our biological child and I am 40. Through the miracle of modern medicine I will be able to have my own child. I feel so blessed to have this opportunity although there is still so much anger over what we went through to get here. I also worry about all of the additional hormones I pumped into my body.
    I read about my possible future on various sites and through DES Action. I try not to think ahead and only pray that my infertility was the worst I will encounter. I pray for all of us.
    Marianne (exposed in Texas 1970)

    1. As I read your words, so concise and yet representing such a long pathroad of denial, incompetence, pain and despair, I suddenly wondered how any woman can resist so much obscurity – like in a soul-destroying prison. Your testimony is the only answer – you crossed the darkness together with your husband and your words are now offered to others, with the message “Never give in”. Ahead of you there will be sunlight and smiles – your baby will soon be there and that is such a miracle. We are so many millions concerned by DES over the world – and we must never give in over this vital issue. I’d like to give you a hug and also may I say thank you for sharing and reminding me of what is really important in life – love and sharing !
      Pam, in France, a DES mum

  8. So surprised to see you described the part you become a mother with a single sentence. I mean as i was reading the article the question what happened next and did get a child came and u finished it in one sentence. Grace and for the Doctors and thank god for the blessings.
    plus size fashion

    1. Thank you for your comment. When I became a mother it was the best day of my life and I decided to turn the page about DES and never talk about it again … but unfortunately it’s not something you can leave behind you. My daughters are beautiful and I love them to bits! I have re-opened the DES chapter of my file by creating this blog for them and for my mum who is now ill with something that may be related to DES … I don’t want to talk about the joy of becoming a mum in this blog because many DES daughters have been stolen the right to experience this joy. What’s important in this blog in not so much about the part when I became a mother but all the struggle before … and now most likely after since my daughters are at risk … Thank you for your understanding! I definitely feel blessed to have children and I am grateful for the doctors who made it happen.

  9. I am also a DES daughter. I have never in my life had a normal pap smear. It took 5 yrs of infertility treatment for me to finally have my beautiful son. He is 25 yrs old now. My mom was in complete denial that she took DES, until about a yr before she died. Then she told me “the nurse said I was given that med”. Reading people’s posts, it’s like you’re telling my story.
    sharon

  10. My mother received DES when she threatened to miscarry with me. I am now 51 years old. I have had 3 miscarriages. I have been blessed to have 2 children. Each pregnancy had complications. I was diagnosed with Endometriosis at age 24. I had several fibroids develop on my uterus in my early 30’s. By 40, I was diagnosed with an enlarged kidney. As a nurse, we are taught the genital-urinary system comes from the same cells when developing. I also have a kidney that is deformed. I don’t think this just happened. By 42, I had my right kidney removed. I have been diagnosed with Hypothyroidism. Oddly enought, my daughter at a young age was diagnosed with Hypothyroidism. She was also born with a birth defect to the urinary tract. DES was a terrible drug. I wonder there is a correlation between DES myself and my daughter’s conditions? Anyone know of any research on this?
    Thank you. Valerie

  11. I began researching DES exposure because my third generation DES son is battling two separate cases of testicular cancer, and I wondered about a connection. My son’s first cancer was Teratoma, a large, confined mass, that was removed in January. He was told it was the largest Teratoma tumor that his surgeon had ever removed, and that had probably been growing for at least six years, but it was confined and had not spread. After a CAT scan, it was discovered that he had another testicular cancer in his other testicle that had metastasized. He is fighting for his life now. We have a long road ahead. I had all of the same infertility problems that I have read about in this blog, and I was born prematurely. My mother also had breast cancer, and I have hypothyroidism, however with all of the autoimmune diseases present in my family tree, I question whether or not my hypothyroid is truly related to DES exposure. When will all the pain and suffering end? Will there be fourth generation consequences? Should I encourage my other son not to have any children? Just like most of you I wanted children and grandchildren. I believed I would not have been born without DES, but that is obviously not the case.

Have your say ! Share your views

This site uses Akismet to reduce spam. Learn how your comment data is processed.