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

  • Hi everyone,

    Kindly consider voting for WONDER DRUG – my script about DES – to be IndieWire’s “Project of the Week”: http://www.indiewire.com/article/vote-for-project-of-the-day-will-it-be-aurelia-place-to-stand-wonder-drug-or-lens

    Voting ends on Monday August 6, at 11AM Eastern — but don’t delay and VOTE TODAY!

    Thank you!!

  • Susan O

    Thank you for this, Caitlin. I was DES exposed and had to have an early hyesterectomy. Ive been battling Adv lyme disease for so many years, I had forgotten about the DES after letting go of being a Mom.

    Blessings to you..

  • DRDANIELS16

    I am a DES daughter & at my first pap, age 16, they found pre-cancerous cells. I had laser surgery & at 19 had to undergo freezing. They also removed a breast cyst at 19. Two abdominal surgeries before age 7. I had Reubella, measels, mumps, mono, every virus that went by & literally spent a third of my life in a hospital from birth through my teens. I was told I’d be a high risk pregnancy but was fortunate in that my organs weren’t deformed. I’ve not had children & am now 42, so likely will never have my own biologically.
    My mother knew after the fact, I was born in 1969, so I’ve been lucky to have the knowledge. I’ve lived with knowing my entire life, so I don’t live in fear of it. I take care of myself & get checked regularly & have been lucky to not have experienced anything else since 19 except the occasional abnormal pap that comes back ok on repeat. However, the fact that this was done to us intentionally for profit is something I’ve never come to terms with & never will. THANK-YOU FOR REIGNITING THIS SUBJECT & SPREADING AWARENESS!

    • Drdaniels16

      Type O…the breast cyst was also at 16, not 19.

    • Susanmtk

      Your post provokes an issue that I’ve been pondering for most of my life.  Like you, I was “sick” with everything as a child.  It was not unusual for me to miss 60 or more days of school in an academic year.  In 1962 or 1963 I was diagnosed as immune deficient and given gamma globulin shots.  I’ve heard some other DES daughters report similar stories, yet I do not know if any of the older or more recent DES studies have linked immune deficiences to DES.  I also wonder about the link to women with urinary tract problems that began in early childhood.  I was told that I was born with a deformed ureter (many of the DES sons had this problem) and was taken to see a Urologist from the time I was 5 until my early teens to “widen” and “straighten” the ureter (ouchc!!!).  I do believe that DES reached into our health in more ways than just our reproductive systems and potential for various cancers.  I’m glad to know you are healthy now and take good care of yourself.  Thanks for your thoughtful post.

  • I am a DES daughter. I’m 51 years old and have had four high risk pregnancies that resulted in four healthy children. I was on complete bed rest for 2 weeks, 6 weeks, 7 months, and 6 months, respectively, for my pregnancies. I had a T-shaped uterus and began bleeding and contracting very early in my pregnancies. I just wanted to share my story with you, not because our uterus problems are the same, but so others can see it is possible for DES daughters to have children. I had a hysterectomy two years ago after having precancerous cells that were removed and then returned. I fully suspect that DES has caused me health problems that aren’t related to my reproductive organs. I love the DES Action Group for what they do. Thanks for sharing your story. It’s so sad that millions of people have been affected by DES, yet so few people even know what it is.

    • Thank you, everyone, for your comments. It’s so important for all of us to have this conversation about DES — not just here, but with others in our lives. You never know where or when you’ll meet another DES Daughter. I just met two last week in a professional development class for teachers!

  • Thanks Caitlin for your story. I, too, am a DES daughter & only found out in my late 30’s, a few years ago. I, too, sometimes feel like I’m living with a time bomb but at least feel empowered by keeping up with my annual checkups. 

  • Thanks Caitlin for your story. I, too, am a DES daughter & only found out in my late 30’s, a few years ago. I, too, sometimes feel like I’m living with a time bomb but at least feel empowered by keeping up with my annual checkups. 

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