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From DES to the Pill: Are We Doomed to Repeat History?

Published on November 13, 2017

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“The doctor wouldn’t have given it to me if he thought it was dangerous, right?”

My wife asked this salient question as we discussed the pros and cons of The Pill. It sent us both into deep reflection. Everything we read said The Pill was dangerous, but the doctor had acted like they should come in a Pez dispenser. To this day, I’m not sure where the cognitive began and the dissonance ended.

The DES Debacle: Origins of Obstinance

Doctors are generally dogmatic, but their nearly universal laissez-faire attitude toward The Pill seems particularly paradoxical when you study the scope and seriousness of its side effects. How can doctors believe that The Pill is safe, when tomes of studies suggest otherwise? Research links The Pill to everything from breast cancer and strokes, to Crohn’s Disease and lupus. To understand where we are and how we got here, it’s important to study the journey that brought us here.

By 1970, the current dogma that ‘The Pill is safe’ was well rooted in the medical community. However, enough doctors expressed concerns that Senator Gaylord Nelson decided to hold Congressional Hearings on the matter. The big three networks covered the hearings extensively, which caused great anxiety among women taking The Pill — and even greater anxiety among pill proponents, who subsequently demanded more ‘pro-pill’ doctors be included.

Senator Nelson took umbrage with their complaints, noting that all but one of the previous doctors had actually been ‘pro-pill’ to some extent, but all had reservations about its complications. Nonetheless, many of the doctors in the second round of hearings seemed more decidedly ‘pro-pill,’ including Dr. Kenneth Ryan, who stated,

I know of no information that indicates that biological properties of the estrogens used in the contraceptive pill are any different than stilbesterol for which we have at least 30 years of clinical experience…(Competitive Problems in the Drug Industry, Ninety-First Congress, Second Session, Page 6541)

Very reassuring… Unless you were actually familiar with the 30-year history of stilbesterol, also known as diethylstilbestrol (DES). Sir Charles Dodds discovered DES in 1938, and rushed it to market in the public domain. The English doctor bypassed the patent process hoping it would discourage the Nazis from further tests on women prisoners in their development of ethinyl estradiol (Barbara Seaman, The Greatest Experiment Ever Performed on Women; page 36).

From DES to the Pill

Despite his noble intentions, Dodds soon regretted the decision. Without a patent, drug companies around the globe were free to produce DES. He never expected that synthetic hormones would be given to healthy women, and was horrified that doctors were prescribing it as hormone therapy for natural menopause.

You Can’t Put the Hormones Back in the Tube

Even worse, Dodds soon learned that an American doctor named Karnaky had begun blazing a new trail – doling out DES to ‘prevent miscarriages’. Alarmed by the news, Dodds sent him a study he had personally performed, which showed that the drug actually caused miscarriages in animal subjects. It didn’t deter Dr. Karnaky or the many doctors who followed his lead. (Robert Meyers, D.E.S. The Bitter Pill; pp. 56-73)

Dodds began to feel like he was fighting a monster that he himself had unleashed. He was most concerned about how his discovery could affect certain cancers. He sent DES samples to the newly formed National Cancer Institute in the United States, and urged them to conduct tests and notify doctors.

Dodds wasn’t alone. The Council on Pharmacy and Chemistry warned,

…because the product is so potent and because the possibility of harm must be recognized, the Council is of the opinion that it should not be recognized for general use at the present time…and that its use by the general medical profession should not be undertaken until further studies have led to a better understanding of the functions of the drug. (Barbara Seaman, The Greatest Experiment Ever Performed on Women; page 44)

The concerns sent murmurs through the medical community, and many doctors began experimenting with lower doses of DES. By 1940, the editors of the Journal of the American Medical Association (JAMA) felt compelled to add theirs to the litany of warnings:

“It would be unwise to consider that there is safety in using small doses of estrogens, since it is quite possible that the same harm may be obtained through the use of small doses of estrogen if they are maintained over a long period.” (JAMA, April 20, 1940)

In 1959, the FDA determined the link to side effects (including male breast growth) was sufficient to ban poultry farmers from using DES as a growth hormone. However, the widespread use of DES in humans continued. In fact, it had become standard medical practice by the time Dr. Ryan assured Congress that The Pill was just as safe as DES – showing how medical dogma often trumps scientific evidence.

The greater irony of Dr. Ryan’s statement materialized one year after his testimony, when researchers first linked a rare vaginal cancer to the daughters of women who received DES during pregnancy. The FDA reacted strongly, listing pregnancy as a contraindication for DES use.

Consumer Groups Take the Lead

You would expect this to be the beginning of the end for DES. Shockingly, the medical community responded with indifference, continuing to prescribe DES for a variety of ‘off label’ uses, including as a morning-after pill, to catalyze the onset of puberty, and the old faithful, hormone replacement therapy. (Robert Meyers, D.E.S. The Bitter Pill; page 185)

It took nearly a decade of passionate effort from consumer movements like DES Action to convince doctors to (mostly) abandon DES. Dozens of lawsuits were filed; some were settled; and some are still pending. There is evidence that the harmful consequences could now be affecting a third generation of DES victims.

The current Director of Epidemiology and Biostatistics at the National Cancer Institute, Robert Hoover, M.D. oversees the DES Follow-Up Study to track the ongoing repercussions. With identifiable problems now affecting the grandchildren of women who took DES, the disaster hasn’t yet moved into the past tense of our nation’s history. Despite that, Dr. Hoover says:

There’s essentially a whole generation of medical students who don’t know the story. The story has such powerful lessons that I think that’s a tragedy…For about 20 years now, when I standardly ask in my general epidemiology lecture… how many of you have heard of DES, nobody raises their hand.

Sidney Wolfe, M.D., who headed up Ralph Nader’s Health Research Group offered this perspective,

DES is an excellent example of how drug companies behave, how they take advantage of the ways doctors act, and how they make millions of dollars by ignoring evidence of a drug’s harmfulness, by failing to get evidence that it is effective, and then by marketing a product that plays on fears and misconception. (Robert Meyers, D.E.S. The Bitter Pill; page 208).

In just 20 years, the American Medical Association moved from “It would be unwise to consider that there is safety in using small doses of estrogens…” to embracing the release of insufficiently tested hormones as birth control for millions of women. I’m leery of trusting a dogma founded on such an erratically moving target. In their defense, the dogma really hasn’t moved much in the decades since.

Today, the medical community assures us The Pill is the most researched drug ever. Sorry doc, that reassurance just doesn’t ring true. At this point, it feels more like a phrase learned by rote than a statement based on any kind of empirical evidence. Unfortunately, it’s not the only hollow mantra that should raise a red flag when it comes to hormonal contraceptives. I will discuss how the medical community responds to scientific studies in my next post, The Spin Doctor’s Prescription for Birth Control.

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This article was published originally on Hormones Matter on August 31, 2016.

She Was Given DES and My Story Begins

by Holly Holman Patterson

Published on September 24, 2013

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My story is not special other than it is my story. My mother, a Navy wife, got pregnant with her first child on her honeymoon. Nine months later a healthy baby girl was born. Over the next six years she suffered miscarriage after miscarriage in an attempt to expand her family. Finally, late in 1954 she learned that she was once again pregnant. The doctors told her that there was a wonderful medication available to help support the pregnancy. She was given diethylstilbestrol (DES) and my story begins.

The Early Realities of DES

My childhood and youth were not very eventful. As an adolescent, I had very painful periods, though still not outside the norm. When I was 19 years old in 1974 my mother read an article in a woman’s magazine about DES, and the daughters who were now having health concerns do to DES exposure. Recognizing that she had taken DES during her pregnancy with me, she told me that I should be evaluated by a physician. Up until then I had never had a PAP test or any pelvic exam. I was young, modest, and naive. My innocence was gone in the sterile clinical exam room. Medical history taken, laying down on the hard table, feet in the stirrups I was poked, prodded, and then scraped for samples of cervical cells. Then the doctor asked for the colposcopy equipment to be brought in. Wheeled into the room, my insides were stained, and then magnified. Finally, when the abnormalities were found, the camera attached to the colposcopy machine documented the DES damage. I was now a DES Daughter.

These exams now became an every 6-month ritual as I was told “you will get cancer, it isn’t a matter of if, but when.” They wanted to catch the cancer (Clear Cell Carcinoma) the moment it turned. After a few years though with no changes they had started relaxing their prognosis. I was allowed to go in for these exams once a year. Still cautious, but more optimistic, I starting living my life as a young woman. I dated, fell in love and got married.

Starting a Family as a DES Daughter

When my husband and I decided to start our family, I had been given no warnings about the potential issues with pregnancy combined with my DES exposure. My fertility was good, I got pregnant right away. The pregnancy also went smoothly until the 22nd week of gestation. I was feeling nothing different, enjoying the growing baby I was carrying. Without warning my water broke. Quickly I called my Ob/Gyn who dismissed my experience. “Perhaps you just lost bladder control, not unusual.” I knew it was not an issue of bladder control, so I went in to his offices. It was the lunch hour, the offices were quiet and the staffing short. I was taken back to an exam room and waited. I waited a long time, and finally, the dismissive doctor came in to examine me. He tested my discharge and his affect changed at once. He called over to the hospital and had me admitted at once.

DES Exposure Claims its First Victim

I was observed for several days, with no changes. Finally contractions started, and at 22 weeks I delivered a nearly one pound baby boy. He died during the delivery. The DES exposure had taken its first victim.

DES Exposure Claims its Second Victim

A few months later, back in the sterile exam rooms for more testing, I was found to have a very incompetent cervix. I was told that I would be considered a high risk pregnancy from then on, though they felt there were options to help me carry a baby to term. With the blessing of the doctors I became pregnant again, and this time a cerclage was placed in my cervix to help support the pregnancy. When the doctor came in to see me just after the cerclage was placed, his face was long. “Your cervix is very weak. You are only 11 weeks pregnant, but already you are totally effaced and starting to dilate. You will need to be on total bed rest, and make the pregnancy last as long as you can.”

With that I was sent home and spent the next 12 weeks in bed. At 23 weeks I started spotting and having contractions. I was taken to the hospital where they tried to stop the labor, but could not. I delivered my second child, a son who was 1 lb 8oz. with paper thin skin. I could fit my wedding ring over his hand and up his arm. We were told to expect him to die within an hour of birth due to his prematurity, but he didn’t. He lived an hour, then two then four. Finally they decided to transfer him to a NICU unit in a larger city about 2 hours away by car. I was alone on the maternity floor, mothers nursing babies, walking the halls calming fussy babies, and my child was a fragile package whisked out of my sight, and off to another hospital far away. Tyler lived for 10 days. He fought hard for life, that one and a half pound baby boy. In the end, death won, and DES had taken its second victim.

We Tried Again and Succeeded

I took a few years off from trying to start a family. I had grieving to do..and healing. I finally went up to the Medical school where I was first diagnosed as DES exposed and put myself in their care. There was one surgery they thought could offer me hope of having a child. It was a rare experimental surgery called a “Trans abdominal cerclage”. The procedure was so rare that they asked to film the surgery because there would be medical students who would not see a case like mine during their education. I agreed. So, I once again became pregnant, and at 11 weeks of pregnancy, I went back to the medical school and had the trans abdominal cerclage placed. Because of my medical history I was told to go to bed again and make the pregnancy last as long as I could. This procedure was a good fix. I carried my third child to term. Four years later I put myself in their care and had my last child, again at term. These two children are now young women. I feel blessed for the good medicine that allowed me to have these children.

I Am a DES Daughter

DES did not stop with my body, or my children’s lives. My mother has been diagnosed with breast cancer, something that her DES exposure has put her at risk for. She has had treatment and it looks as though DES will not get to claim her as yet another victim.

My innocence was taken by DES. My first two children died due to DES. My mother has suffered due to DES. I do not consider myself a victim of DES, however, I am a DES Daughter.

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