08.01.12 Wellness

I’m a DES Daughter, Are You?

BY Caitlin McCarthy

I discovered during a colposcopy in 2005, at age 35, that I had been exposed to DES (diethylstilbestrol) in utero. Unbeknownst to me and my family, I was a victim of one of the biggest medical disasters in history, affecting millions of people worldwide.

The news hit me hard: What is DES? How could this have happened? Why hadn’t any doctors noticed before now?

Here’s what I learned:

What is DES?

DES is a toxic and carcinogenic synthetic estrogen, considered by many to be the world’s first drug disaster. It was prescribed to millions of pregnant women for decades: from 1938 until 1971 (and in a small number of cases for several years thereafter) in the United States; and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World.

The currently proven effects of DES exposure include a rare vaginal cancer in DES Daughters; greater risk for breast cancer in DES Mothers; possible risk for testicular cancer in DES Sons; abnormal reproductive organs; infertility; high-risk pregnancies; and an increased risk for breast cancer in DES Daughters after age 40. There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research.

The DES story is timely for women, as many are undergoing infertility treatments with hormones and HRT interventions with additional hormones. If they don’t know that they’re a DES Daughter, they are unaware that they were exposed to unnaturally high levels of a synthetic estrogen before birth. That has to be of concern when using additional hormones.

How could this have happened?

For decades, Big Pharma claimed DES prevented miscarriages and problem pregnancies. DES was sometimes given as an injection, but primarily it was prescribed in pill form. Never patented, DES was marketed under 200 different names, although the majority of the drug was actually produced by Eli Lilly. DES was sometimes even included in prescription prenatal vitamins (which is how I was exposed…my mom had no idea!).

No controlled studies were ever conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy, even after some scientists started questioning its efficacy in the 1950s. As early as 1953, research revealed that DES did not work – that DES actually brought about higher rates of premature birth and infant mortality – yet DES continued to be prescribed to pregnant women until 1971. This is because pharmaceutical companies continued to heavily promote DES use to doctors. The drug was a top moneymaker for Big Pharma.

Doctors discovered the DES link in 1971 and published their findings in the April 1971 issue of New England Journal of Medicine. News of the cancer cases made national headlines. However, the FDA did not issue an alert about DES until November 1971. Note the FDA did not ban DES for human use.

Why hadn’t any doctors noticed before now?

Most doctors aren’t learning about DES in medical school, and don’t even know that DES Daughters need a special Pap screening.

As a result, millions of DES-exposed women and men are not receiving the proper checkups, tests, and treatments from doctors.

Unfortunately, there isn’t a “test” to determine DES exposure. However, there are certain telltale physical signs of exposure, such as T-shaped uterus and cockscomb or “hooded” cervix (which is what I have). The CDC does have an online DES self-assessment guide here.

The medical records of DES Mothers were destroyed long ago, as doctors aren’t required to hold onto them indefinitely. For people born between 1938-1971 in the US, it is highly likely DES was prescribed, especially if there were problems with the pregnancy or a previous miscarriage. Thus individuals who suspect exposure should become a personal detective by assessing health problems such as infertility and cancer. If those issues start adding up, then it’s a good possibility that DES is part of their personal health history. They should take precautions such as staying current on the latest DES research, and being vigilant about proper health screenings such as having annual mammograms and the special DES Pap/pelvic exam every year.

People born between 1938-1971 should also ask their mothers if they experienced any issues during their pregnancies (such as spotting or bleeding), and whether they were prescribed DES or a prenatal vitamin. If their mother is no longer alive, sometimes asking an aunt or friend of the mother will reveal information about pregnancy history that might be helpful.

That’s a lot to take in, isn’t it?

You can imagine what I felt while researching this:

Fear that I’m going to die from cancer. I stay on top of my DES-related precancerous cell activity with annual GYN visits. But still, I often feel as if I live under a medical guillotine.

Sadness that I’ll most likely never give birth to a child. My GYN said I’d be a high risk pregnancy, and that staying pregnant would be an issue because of my malformed cervix.

Anxiety that men would view me as “damaged goods” and not want to be with me. I now believe that any man who views me as “damaged goods” isn’t worth my time.

Anger with the drug companies responsible for the DES drug disaster. To this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, they have paid millions in verdicts and out-of-court settlements to DES Daughters and Sons who suffered injuries from their exposure.

I took charge of the situation by educating myself on DES, which led to the creation of an award-winning screenplay called ‘Wonder Drug.’ I’m firmly committed to educating others about DES.

Additionally, I contacted the offices of my US Senators John Kerry (D-MA) and Scott Brown (R-MA) and asked them to jointly pursue a long-overdue apology for the DES drug disaster from the FDA. On February 22, 2011, Senator Kerry and Senator Brown received a 3-page response from the FDA, per 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, explained FDA initiatives to prevent future drug disasters, and talked about DES as a “tragedy” after 40 years of silence.

View Senator Kerry and Senator Brown’s joint press release here.

Lastly, thanks to the Internet, I connected with other DES Daughters and Sons. Their support, feedback, and friendship have made all the difference in my “new” life as a DES Daughter.

I admit that the pity path has been awfully tempting at times. But the path of empowerment feels so much better.

If you’re a DES Daughter, or suspect you may be one, these links can help empower you:

Thank you for reading and be well.

XO, Caitlin

Caitlin McCarthy received her Master of Fine Arts in Creative Writing from Emerson College, which is ranked by U.S. News & World Report as one of the best graduate programs in the country.  An award-winning screenwriter at international film festivals and labs, Caitlin has written two feature films: WONDER DRUG and RESISTANCE. Caitlin is also partnering on writing/creating the TV series PASS/FAIL with Jim Forbes, a multiple Emmy, ALMA, AP and Golden Mic award-winning writer, producer, correspondent and narrator; and developing the TV series FREE SKATE with choreographer Michael Masionis. In addition to screenwriting, Caitlin serves as an English teacher at an inner-city public high school. Prior to education, Caitlin worked in public relations, where she fostered relationships with the press and crafted messages for companies that were delivered worldwide. For more info, visit Caitlin’s official website, Facebook page or Twitter at @CaitlinMcWriter.

Comments

  • @Autism_Exposed

    A giant thank you for shining a light on this unbelievable catastrophe. 

    When
    you give a pregnant woman a drug, it affects three generations at once:
    (1) the expectant mother, (2) her fetus, and (3) the germ cells (proto-egg or proto-sperm) growing in that fetus. 

    Please note that DES was just one of dozens of potentially teratogenic, toxic synthetic steroid hormones given to pregnant women in incredibly high doses during the decades of roughly the 50s-70s.  Other synthetic
    hormones included:

    (Progestins)
    Broxorone, Colprosterone, Deladroxate 110, Deladroxate 130, Deladroxate 150, Delalutin 142,Delaxadrone, Deluteval,
    Depo-Provera, MK665, ethymerone,19NET, Norlutin,
    Norlutin Acetate, Norethynodrel, Pranone,
    Provera, Provest,
    RS1280, SC4641, 19 NET, SC4642, norethynodrel, SC9022, methylnortestosterone, SC10230, SC11800, ethyndiol ,1 142.53  aqueous progesterone;
    (Additional estrogens) Allyl Estranol, Amestrogen, Delestrogen, Estrone, Hexestrol,
    Mestranol, Stilbestrol (same as DES);

    (Other hormone drugs) Thyroid, Cytomel, Methergine, Prednisone, Proloid, Sterane, Synthroid.

     
    I had the incredibly rare opportunity to obtain my own prenatal records from the 60s (it’s a long story), and was shocked by what I found — exposure to at least three synthetic hormones in the first half of my gestation (though not DES). 

    I did not suffer infertility or cancer, but.

    But my genetically normal and otherwise gorgeous and healthy children have severe idiopathic (no known cause) autism. 

    Many people in both the lay and scientific communities are finally coming to the awareness that the acute pharmaceutical exposures so common during the prenatal pharmaceutical craze of our parents’ generation may have impaired the vulnerable and delicate epigenetic reprogramming of our fetal germ cells. The exposures of the 50s, 60s, and 70s created latent damage to germ cells, damage that did not reveal itself until the grandchildren were born starting in the late 1980s.

    IT IS THE JOB OF STEROID HORMONES TO ALTER GENE EXPRESSION.  THAT IS WHAT THEY DO.  If you give a fetus SYNTHETIC molecules featuring structures that do not occur in nature — and in fact never occurred in millions of years of human evolution — but that still bind to the hormone receptors to affect gene expression, then it’s likely that gene expression will be altered in unpredictable, abnormal ways.  This is what happened with DES, a molecule that is completely foreign from the point of view of evolutionary biology but acts “like” estrogen.

    If a critical number of germline genes implicated in brain development and function are silenced or epigenetically misprogrammed by abnormal synthetic hormone germline exposures, you may have end up with kid with a brain that cannot weave together in ways that drive normal social and communication development.  You might call that autism. You will call that autism.

    I am sorry to discuss the other synthetic steroid hormones and the connection to autism, and hope I did not stray too far off topic.  I am profoundly grateful to Caitlin McCarthy for her exceptional smarts and dedication to spreading awareness about the DES horror.  She already has my Academy Award.

    • Okay, you just brought tears to my eyes. Tomorrow (August 2) is my birthday. Your comments are such a gift. Thank you!

    • @Autism_Exposed

      Have the happiest of birthdays! I hope you know you possess the greatest gift of all–doing work that will profoundly help millions of people.  Even if they don’t all know it yet.

    • Big hug to you!

    • Hugh Easton

      In the developing unborn child, hormones do more than just alter gene expression. A little-known fact is that it is actually hormones, not genes, that drive sexual development and determine whether the baby born at the end of the nine months is a boy or a girl.

      For about a year now I’ve been a member of a support group for DES sons, and based on their experiences and my own, I’m pretty sure that any DES son whose mother was on the standard “Smith and Smith” protocol for prevention of miscarriage will have had their testicular testosterone production completely shut down throughout the second and third trimester of the pregnancy. The doses involved were way beyond the 3mg per day required to fully chemically castrate an adult man.

      A male baby’s physical sexual characteristics develop during the first trimester, while the second and third trimester are the time when most of the brain’s sexually dimorphic development takes place. If you shut down testosterone production during the second or third trimester, you’ll end up with a person who has a male body, but where some parts of their brain have developed as female instead of male. If you’re one of the people affected by this, you’ll probably know deep inside that you’re somehow different from other men, but (speaking from personal experience), it’s not in the slightest bit obvious what that difference is, particularly if, like me, you’ve been suppressing your feminine side for decades. It was only after spending a lot of time reflecting back over my childhood, teenage years and young adulthood that I realised that I’m actually partly a woman. It wasn’t easy bringing “her” back to life either, but well worth the effort. I now feel like a complete person (even if I’m a mixture of the two sexes), and much happier and more at peace with myself than at any time since I was a child.

      If you are a DES son and wondering whether you might be affected, here are some things to look out for:

      * Do you have long, slender arms and legs, a light bone structure, quite feminine facial features, not much body hair and an inability to build upper body muscle? If so, then as with me, your hypothalamus and pituitary have been affected, in turn affecting your hormone regulation. It isn’t necessarily that serious, but there is a risk that you could become acutely hypogonadal as you approach middle age (which, if it happens, does require treatment).

      * As a teenager, having shy, introverted behaviour, being bullied a lot and having an inability to fight back, no interest in sport, difficulty making male friends. This seems to be quite common amongst DES sons, and I think is the result of having feminine body language and female-typical instinctive social behaviour. You’ll probably have subconsciously found ways of suppressing it and making yourself seem more male-typical as you got older.

      *ADHD, depression, feeling unaccountably unhappy without knowing why. If your brain is partly male and partly female, then you’re basically a choir that is trying to sing from two completely different hymn sheets. Some parts of you want to do male things while other parts want to do female ones, which in my case produced a severe internal conflict going on for most of my adult life. I think a common effect of this is that your different brain regions tend not to work together very well, which can manifest itself as a wide variety of seemingly unrelated mental illnesses. The answer here is to recognise that you do have these incompatible male and female needs and desires, work out what they are, and find ways of compromising whenever there is a difference of opinion. Don’t ever, ever get angry with yourself about it – after all, none of us had any say in what happened to us before birth. Learn to love yourself (all of yourself) instead! Compromise is what it’s all about, loving yourself and learning to work together as a team.

      * sexual problems. You could, like me, have a female pattern of arousal and orgasm, which means you have all the same issues women have to deal with, such as needing lots of foreplay and an emotional connection to the person you’re with in order to enjoy sex. There’s no cure, but at least now you know why things are like they are (and if you have a supportive partner, then having a woman’s capacity for sexual pleasure is no bad thing IMHO!).

      DES was often co-prescribed with progestins, many of which can mimic the actions of testosterone quite well. Because of that, there’s probably quite a few DES daughters out there who have partially male brains, although I think by far the biggest problem is with the DES sons. Based on what I’ve seen in the support group, I think probably ALL the DES sons who were exposed to “Smith and Smith” will have undergone at least some female brain development.

      If this applies to you, please don’t rush out and have a sex change, instead talk with your partner and see if there’s any way you can express your femininity that isn’t going to make her look stupid. After all, you’re still the same person you were when you first got together, the only difference is that now you know a bit more about yourself!

      Whatever you do, you need to think long and hard about what parts of you are what, along with any relationship and family commitments, and then come up with something that works for you and hopefully won’t wreck all your existing friendships and relationships in the process. In my case I’m growing my hair long and growing a small pair of female breasts that I can conceal if need be. Everything else remains male. That seems to be an acceptable compromise for both the man and woman in me, that I hope won’t mess my life up too badly.

      If you are a DES son reading this, please have a think back to your childhood and teenage years. If you’re honest about it, you’ll probably find there’s something female lurking in there. How you deal with her is entirely up to you, although I do think you’ll find yourself a much happier person if you acknowledge her existence and allow her to become a part of who you are.

      I’m trying to blow the lid on this whole sordid business so that all of us who’ve been affected by exposure to artificial hormones in the womb can finally get recognition for what we truly are: the unfortunate victims of medical misadventure and not deluded freaks or lunatics. Please help me by passing on this message to anyone you know who might be affected, interested or able to help.

      Thank you

      Hugh Easton

    • Hugh, thank you for sharing this story. It’s so important for people to hear about DES Sons!!

    • @autism_exposed

      “I’m trying to blow the lid on this whole sordid business so that all of
      us who’ve been affected by exposure to artificial hormones in the womb
      can finally get recognition for what we truly are: the unfortunate
      victims of medical misadventure and not deluded freaks or lunatics.”

      Good for you! As a victim of this horrific catastrophe I applaud your commitment to the cause.

    • Pegge

      Hugh, Thank you for sharing . I have suffered so much from DES. Your post has given me so much to think about. We need to hear the experience of more DES sons. Your post has helped me understand much about my adolescence.

    • Rich Rivers

      Hughs accounts are very accurate about growing up as a DES son. So much confusion. This also explains the high number of transgender people in society today. If only Leelahs parents read this.

    • to Autism_Exposed, That is awesome that you were able to get your prenatal records. Alas, in an attempt earlier this year to obtain mine, I was advised that they had been destroyed over 30 years ago. They were only kept for 20 years.

      We knew that older sister had been exposed to DES in 1950, then notified in the 1970s by one of the ethical OBs who went back and did a records search after the DES info hit the media. Older sister has had many health issues associated with DES exposure.

      Sometime during my teenage years, my cold, distant, non-communicative mother somehow found it within herself to let me know that she had been diagnosed as “hypothyroid” (high-risk) when she was carrying me. She said the doctor gave her something that made her feel better, and she no longer needed to take it after I was delivered. I asked her if she knew what it was and she just shrugged her shoulders and shook her head. (She was a very well educated RN from a well known teaching hospital – go figure. And how do you reach for a pill bottle every day during your pregnancy and not look at the label, or not speak/hear the name of the drug when getting refills from the pharmacy?) She didn’t seem to think it was a big deal, so I guess I didn’t think so either. I guess my teenage brain thought that the medical profession/pharmaceutical industry was so honest and responsible, I would surely have been notified if I had been exposed to anything that was later found to be damaging, as my older sister had been notified. It is funny how my mother’s memory could be so long and so excellent for so many things, but not what drugs she took when she was carrying me.

      One person in the DES community thought that few mothers have ever reported feeling better when taking DES. But my mother called birth control pills in the 50s/60s her “happy pills.” She may have felt better on estrogen.

      I have had all the infertility issues – miscarriages, breech stillbirth, no living children; thyroid symptoms (mostly undiagnosed by medical profession for most of my life – now being treated, finally), lifelong urinary tract health issues beginning with first bladder infection at age 2 requiring hospitalization, “tilted” uterus, uterine fibroids, etc. I won’t even go into the social issues or my incredibly overly analytical masculinized brain.

      Many mental and emotional health issues in all of my mother’s children – attempted and completed suicide. I have often wondered if the DES did not remain in my mother’s tissues and affect all her subsequent pregnancies, even though the lofty medical profession and Big Pharma would say no. Or affect my mother’s mentality adversely.

      Thank you for continuing to bring more attention to this matter that I thought was over and done with many years ago.

    • @autism_exposed

      What a story. I am working to bring to light the horrific catastrophe of prenatal synthetic hormone exposure. My particular interest is in the fetal germ cells affected by these molecules which are totally incompatible with evolutionary biology.

      See one of the projects I’m working on here: http://www.autismepigenetics.org

      Thanks.

  • Susanmtk

    Thanks for speaking out about DES.  I was just 15 years old in 1971 when my mother told me I was a DES daughter–too young to comprehend how that news would affect my life.  Forty years later and we daughters and sons are still trying to understand the silence, the senselessness, the egregious mistakes and the sorrows.  Your work, like DES Action, is essential in connecting us as a community.

    • DES victims are not alone. Thanks to the Internet, we can connect with each other and organizations like never before. 

  • Rosemary

    Thank you Caitlin from a DES Daughter in Sydney, Australia

    • So glad we can share this DES story around the world.

    • Rosemary

      I should have added a bit more detail Caitlin. I found out when I was a teenager and have had regular annual pap smears. Interestingly, my son was born with a severe hypospadias which I now know is quite common in the next generation. Amazing how this one drug can affect so many generations.

  • WIC

    Thank you for your work. I found out from my Mom, when I was 15 years old, she had received DES to prevent miscarriages. Once I heard this I immediately became a vegetarian and opted for a healthy lifestyle. I had heard cows were being fed the drug and I made a major change in my lifestyle. No longer a vegetarian after 25 years, I did raised my children on clean, healthy lifestyle. My Mom took the drug for 3 pregnancies and with 2 live births. She is 91 years old and very healthy. Every year, when I have my annual exam, I too wait anxiously for the results. Now at 53 in menopause my biggest fear is breast cancer.  I had two complicated live births ( doctors said DES related) and had daughters. My oldest has a son, ( now 6 ) with multiple health problems. One of the many conditions he was born with is hypospasia. A genital malformation common with hormone estrogen exposure, something his urologist mentioned to us. Even though, nobody is willing to connect this to DES. My grandson has had 3 corrective surgeries, one more this winter to finish last years surgery. My daughter decided with the doctor suggestion, to wait for him to be a teenager after this one. Let him decide if he wants to continue the minor correction. What a nightmare for him and all of us. My daughter suffers with cystic ovarian syndrome and hashimoto disease. My other daughter was diagnose with Grave disease at 10 years old and suffers with an autoimmune disease of the thyroid. She also has celiac’s disease and now processing gender identity issues. I have hashimoto disease, my niece has this too. Her Dad, my brother is a DES son. His son ( my nephew ) had thyroid cancer at age 29. Is this all related to DES? Everything I read says it might be. However we might never know. So thank you for getting the word out to educate more and more people on this horrific drug with generations of lasting effects.

    • WIC, I think you should have a conversation with Julie Oliver-Zhang, one of the attorneys handling the historic bellwether DES breast cancer trial in Boston this January. Your children’s conditions sound as if they’re DES-related. If you have a case, it won’t cost you anything. Julie’s law firm would simply take 33 1/3 of your verdict or settlement in exchange for repping you. Julie can explain this much more eloquently than me! Here’s her contact info: 
      http://www.aaronlevinelaw.com/Attorneys/Julie-T-Oliver-zhang.shtml

    • WIC

      Thank you for the info. I will do this!!!!

    • WIC

      I just spoke to Julie. At this time, breast cancer is the litigation. 

  • DES since Teenager

    You didn’t know until 2005? Wow.. I was first evaluated at in 1974 for DES associated risks as my mom did in fact have her records and saw the news article. Trying being told when you are 14 that you might have vaginal cancer, in your 20s being told you might be able to have any kids (Thankfully they were wrong as the majority of women who were exposed to DES in fact did have successful pregnancies) learning in your 30s that even if you get pregnant you might not carry to term (they can sew your cervix shut to help keep the baby to term). In your late 30’s learning that your mom’s breast cancer is probably the result of her DES exposure and in your 40’s that you doubled the risk of fibroids (benign condition but causes bleeding) and then last year that the daughters risk of breast cancer also now appears to be doubling.

    • Jenny

      Thanks for highlighting the emotional impact that exposure to this drug has had on DES exposed children and their families. Trying to negotiate your sexuality when you think you might have vaginal cancer or can’t have children can be devastating for some women and their spouses or partners.

      It also can nearly destroy a daughters relationship with her mom until you realize that your mom really wasn’t given the information she needed to make an informed decision. Shared decision making still doesn’t happen in most health care settings – just yesterday a study on how doctors rarely include families in the ICU was published so there is much we can learn from DES daughters

      Sometimes I wonder if in our generation the use of anti-depressants (which work no better then placebo) by 1 in 10 adults is the next wave of drug company disasters

  • Carol Devine

    I hope many people read this, because so many government bureaucrats run on the assumption that the prescribing doctors have told all their DES exposed patients about DES. It is simply not good enough that people like yourself are finding out about DES later down the track. In the ideal world there should be legislation all DES affected countries (including Australia) to ensure there are ongoing health messages about DES in public health programs.

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