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

  • http://www.facebook.com/profile.php?id=1113556099 Susan Wallace Burns

    thank YOU…Yes I am a DES daughter & I believe my daugher who is 35 is showing signs 🙁

  • searching

    Thanks Caitlin for getting this research and awareness out. I’ve been wondering why I had such weird unusual symptoms at different times of my life. I’ve never been diagnosed with this and I have to do more research. Talk with my mom and sisters. I suspect I’m a DES son, was born in 1958. My daughter and first son both have thyroid related issues. I’m over 50 and have had a number of symptoms that are a concern. Thanks for providing the links to other sites. Are there others that are known specifically for DES sons? Thanks to Hugh Easton on his post.

    • http://twitter.com/judithabarrow judith barrow

      Hi, Your message came into my emails. I think it might be because I had some correspondence with Caitlin a while ago to tell her i also was writing about DES and had been researching for many years on behalf of a relative. I live in Wales in the UK. and have been in touch with DES Action USA for a long time. They helped a lot and provided me with quotes for my book, an eBook. It’s called Silent Trauma and is fictional but built on the facts of the drug. I do hope you don’t mind my contacting you. A percentage of the royalties will go to DES Action USA to spread the word and help all those affected by Diethylstilboestrol.

  • Guest

    January 8, 2013 update: Eli Lilly settled the historic DES breast cancer case after one testimony!

    According to DES Info, Dr. Hans-Olov Adami, the Harvard Department of Publish Health, testified that the evidence is so compelling that even the Harvard Women’s Health Watch and the Institute of Medicine of the National Academies stated that mothers and daughters “who were exposed to pharmacological levels of DES in utero experienced important and devastating effects many years later, including an elevated risk of breast cancer.”

    Dr. Adami testified that epidemiological evidence was not only applicable to the DES daughters, but to ANY DES daughter who developed breast cancer above the age of 40 or 50 so long as they did not have any other unusually high breast cancer risk factors.

    He testified that the experiment on women in the case of DES was truly a human tragedy, as he published in the European Journal of Epidemiology.

    Eli Lilly did not even complete their cross examination of Dr. Adami, when they, during a break, approached the Plaintiffs and the Judge to settle the case with an undisclosed sum.

    I described Dr. Adami’s testimony as a “Mike Tyson knockout punch” on CBS/WBZ-TV: http://boston.cbslocal.com/2013/01/09/drug-maker-settles-with-sisters-who-blame-cancer-on-pregnancy-drug/

    Thank you Amanda and The Conversation for helping to raise DES awareness. And thank all of YOU for reading my post and sharing comments. I deeply appreciate it!

  • http://twitter.com/CaitlinMcWriter Caitlin McCarthy

    January 9, 2013 update: Eli Lilly settled the historic DES breast cancer case after one testimony!

    According to DES Info, Dr. Hans-Olov Adami, the Harvard Department of Publish Health, testified that the evidence is so compelling that even the Harvard Women’s Health Watch and the Institute of Medicine of the National Academies stated that mothers and daughters “who were exposed to pharmacological levels of DES in utero experienced important and devastating effects many years later, including an elevated risk of breast cancer.”

    Dr. Adami testified that epidemiological evidence was not only applicable to the DES daughters, but to ANY DES daughter who developed breast cancer above the age of 40 or 50 so long as they did not have any other unusually high breast cancer risk factors.

    He testified that the experiment on women in the case of DES was truly a human tragedy, as he published in the European Journal of Epidemiology.

    Eli Lilly did not even complete their cross examination of Dr. Adami, when they, during a break, approached the Plaintiffs and the Judge to settle the case with an undisclosed sum.

    I described Dr. Adami’s testimony as a “Mike Tyson knockout punch” on CBS/WBZ-TV: http://boston.cbslocal.com/2013/01/09/drug-maker-settles-with-sisters-who-blame-cancer-on-pregnancy-drug/

    Thank you Amanda and The Conversation for helping to raise DES awareness. And thank all of YOU for reading my post and sharing comments. I deeply appreciate it!

  • http://twitter.com/CaitlinMcWriter Caitlin McCarthy

    FROM DES INFO: During the historic DES breast cancer trial, Dr. Hans-Olov Adami, the Harvard Department of Public Health, testified that the evidence is so compelling that even the Harvard Women’s Health Watch and the Institute of Medicine of the National Academies stated that mothers and daughters “who were exposed to pharmacological levels of DES in utero experienced important and devastating effects many years later, including an elevated risk of breast cancer.”

    Dr. Adami testified that epidemiological evidence was not only applicable to the DES daughters, but to ANY DES daughter who developed breast cancer above the age of 40 or 50 so long as they did not have any other unusually high breast cancer risk factors.

    He testified that the experiment on women in the case of DES was truly a human tragedy, as he published in the European Journal of Epidemiology.

    Eli Lilly did not even complete their cross examination of Dr. Adami, when they, during a break, approached the Plaintiffs and the Judge to settle the case with an undisclosed sum.

  • Donna

    DES Daughter, Had everything but clear cell (hope not to have later on). Had 6 miscarriages, almost died from ectopic preg. and also ovarian torsion(secondary from infertility treatment). Had one child from adoption, glad he doesn’t have my altered genes, despite he has is on the spectrum(autism).
    Despite the above I was moving on until 4 years ago, my sister(DES exposed) died of breast cancer after a 5 year battle(also had MANY colon polyps since age 30). Got diagnosis with breast cancer 4 months later(demanded a MRI after a negative mammogram-have dense breast like all DES daughters & mothers too!). Had a double mastectomy with reconstruction. Picked myself up and was moving on! Unfortunately it has been one thing after another. Had my first colon polyp a year later. Then it was multiple autoimmune problems. Unfortunately they are not the “run of the mill type” but aggressive, erosive. Lost a wrist bone in my dominant hand and now my other hand is effective. I also have large erosions in both lower arm bones of my right hand. My thyroid does not work right and I have another connective tissue disease(autoimmune) that is vascular but they are more concerned about the psoriatic arthritis. I live with chronic pain and their is little the doctors can do, more surgery and medications. I am on the Remicade and have to make sure I do not get an infection(I could died from). I just recently started on it and it has not started working yet.
    BUT I am a DES daughter. I am strong after enduring many challenges. I am concerned about future. I think the autoimmune and endocrine problems have not been researched enough. My mother had a parathyroid adenoma and autoimmune disease. My younger sister(supposedly not exposed and had 2 children but septum of uterus) has 2 autoimmune disease and a pituitary adenoma. Her son has 2 autoimmune diseases(thyroid and psoriasis)@20 years old and was born with only one ventricle(heart).
    I wish there was more research on the endocrine effects, autoimmune problems and the future generations!
    Thank you Caitlin for all you do!

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