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

  • Reed

    This is an incredibly important story. Thank you Caitlin for sharing something so personal. 

    • I’m so glad that you enjoyed it. Thank you for taking the time to read and comment!

  • Unfortunately yes, I’m a DES Daughter … This is such an inspirational true story. Thanks Caitlin for  sharing your DES journey and for all that you do to ensure that the DES tragedy is not forgotten!

  • Busymom25

    Thank you for telling your story, it is so heartwarming to hear you are not the only one living with this. I am a DES daughter, and my mom was given des in her prenatal vitamin as well. I have been living with this since I was 15 (first pap). I do have 2 daughters which doctors said I would never have. Now at 43 I have a great team of doctors that keep on top of all of my female problems.

    • It’s so important for DES Daughters to have good medical care. DES Action USA (www.desaction.org) maintains a list of physicians who are up-to-date on DES issues. People should contact them if they need help locating a good GYN. 

      If you are a DES Daughter or Son, you are not alone. There are 5-10 million of us in the US alone, and many others around the world. 

      I’m committed to raising awareness about DES, and strongly encourage others to tell their DES stories. This is far from a dead issue. We are very much still alive!

  • What a powerful piece- thank you for writing this. I was born in the early 1980s, but many women in my life were born before 1971 and this is something I would want to share with all of them. I do not understand at what point a paycheck becomes more important than humanity. Aren’t we all on the same team? We are all capable of making mistakes – we’re human. But where’s the value in mistakes when no ownership or correction measures are taken? We have a lot to learn. I very much look forward to seeing your film. Thanks again.

    • Thank you, Dana, for your comment!

      Because DES was prescribed until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World, there are DES Daughters and Sons in their late 20s.

      Researchers are now investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren. As study results come in, there is growing evidence that this group has been adversely impacted by a drug prescribed to their grandmothers.

      Most doctors today think that DES is not a problem anymore. How wrong they are! It is that “head buried in the sand attitude” that most riles those of us who were exposed to DES.

      That’s why having a conversation about DES is so important — and why I appreciate “The Conversation” for letting us have one here!

    • Are there any “symptoms” associated with exposure to DES that could trigger possible detection? Meaning, how would someone even know they are at risk if they aren’t feeling anything? I did see you mentioned auto-immune disease can be an effect of DES exposure. If a woman has something like fibromyalgia, Lupus, Epstein Bar Syndrome, etc, does this mean she might be a DES Daughter? Wow, lots to think about!!

    • 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.

    • Whoops — here’s the CDC link: 
      http://www.cdc.gov/DES/consumers/guide/index.html

  • I am not a DES Daughter but became involved with the charity DES Action UK many years ago because a relative was. I wrote an article for them in their annual newsletter and received a lot of feedback. Following that I wrote a novel under the genre ‘fiction built on fact’ but have been unable to publish it due, according to many publisher, to the legalities surrounding such a publication. In January the Sunday Independent published an interview with DES Daughter, Domino, who  supported me in my efforts to have the interview used as a Forward to the book.Yesterday the Independent kindly gave their permission for me to use the interview. For a long time DES Action USA, firstly Pat Cody and now Fran Howell, plus many others, have also given me permission to use quotes from  various DES related sources at the start of some chapters. My novel, Silent Trauma, will be published as an eBook in the autumn of this year (2012) Unfortunately, due to lack of funds and dwindling numbers, the founder members of DES Action UK have finally had to close down the charity. Your story is powerfully written and extremely moving – and it is important that voices such as your own are heard. 

  • Debbie

    Thank you for this piece. I am a 63 yo DES daughter. My mother was prescribed the DES pill to keep her from miscarrying. I discovered my status when in my 20’s when a friend told me about DES and referred me to a clinic at the Hospital of the University of PA. I’ve had two sons. Both pregnancies concluded with premature labor and 6 weeks of bedrest and monitors. I feel blessed to have delivered two healthy babies despite my DES exposure.  I continue with yearly PAPs but have to remind my docs now and then about my status. I’m looking at the research on what happens to us in menopause. Any research that you know of?

    • Debbie, DES Action USA’s staff tracks all of the latest research, so I suggest contacting them at http://www.desaction.org. I hope this helps!
      Judith, thank you for your kind words. I appreciate them!

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