Double Exposure

Then, while reading up on the DES that was given to my mother and many other women in a misguided attempt to prevent miscarriage, I stumbled upon the word Stilbestrol, a brand name for DES. I suddenly felt ill. Stilbestrol was the name of the drug I had been given as a teenager for five years to prevent me from growing too tall.

By C.C.

As an American “tall girl” who never knew anyone else who had been treated with hormones for being “too tall”, it was my great good fortune to discover recently that there are others like me in Australia. I believe there are probably more of us in the U.S. as well, but so far it has been hard for us to find one another. I hope that will change.

I did not realize what I had been given until I was well into my thirties. It was then, after a miscarriage and the premature stillbirth of twin daughters, that I learned I was a DES daughter. Then, while reading up on the DES that was given to my mother and many other women in a misguided attempt to prevent miscarriage, I stumbled upon the word Stilbestrol, a brand name for DES. I suddenly felt ill. Stilbestrol was the name of the drug I had been given as a teenager for five years to prevent me from growing too tall. So not only had I been exposed in utero to the effects of DES, but I had received large doses of this drug as a teenager.

Growing up in a small town in southern California, my mother and father were worried when I rapidly grew four inches in the eighth grade. My periods had not started yet, and my mother, who was concerned, took me to the family doctor. He referred me to an internist, Dr. Peter Maurice, who X-rayed my ankles, my wrists, my pituitary gland, and perhaps other body parts I have forgotten about. The physical exam itself was embarrassing.

The doctor acknowledged that he could find nothing wrong with me. But yes, he told my parents, he believed I could grow quite tall. (No surprise there. Both parents were tall.) His suggestion? A pill, not much different than a birth control pill, as he described it to my mother and me. This was 1964 and I suspect the marvels of the birth control pill were just being realized. What we didn’t realize, was that Stilbestrol was something quite different.

When I first started taking the drug, it upset my stomach terribly. I threw up several times a day, and headed off to school with a bottle of green liquid medicine that was supposed to keep the nausea at bay. It didn’t. My mother took me back to the doctor. He asked me to swallow another pill in the office, which I did, and promptly threw it up two minutes later.

Somehow he managed to get the vomiting under control, but I had another problem. My breasts would leak. In gym classes, doing exercises on our stomachs, I would get up and have a wet shirt. Or I could be walking down the street and suddenly I would have what I later recognized to be a “let down” reflex of a nursing mother. When I complained about this to the doctor he told me it was caused by “too much petting in the back seat of a car,” that I was somehow stimulating my breasts to leak. At 15, I was too embarrassed to report this to my parents. But since petting in the back seat of a car or anywhere else was an activity I had yet to experience, I knew he was wrong.

During my first year in college Dr. Maurice determined that I was now diabetic. His tests showed that I couldn’t metabolize sugar well, so I was put on oral medication for diabetes. In my second year of college when I came down with mononucleosis and was hospitalized, the medical staff was completely confused about the strange drugs I was taking. They told me I was not diabetic and that the drug he’d given me for that was harmful. I was to throw it away. They contacted Dr. Maurice about the Stilbestrol, and after recovering from mono, my mother decided maybe it was time to stop all the drugs.

Hallelujah! But coming off the Stilbestrol was not so easy, either. I couldn’t sleep and when I did I had terrible nightmares. I bled so voluminously that I needed a D&C.

I ended up measuring just under 6 feet tall. My mother is a bit shorter, my father a bit taller, my brother is 6-feet 5-inches. I always thought it was ironic that the models who graced all the magazines when I was a teenager—Verushka, Jean Shrimpton—were all tall, too – yet for them it was an advantage, while for me it was treated as a disease.

I was fortunate to be able to have one daughter; many DES daughters are unable to have any children. But I have had endless gynecological problems and no way of knowing which DES exposure caused what. Bit by bit, parts of my reproductive tract have become diseased and been removed. I’ve suffered from depression on and off for years, and have always wondered how much of that was due to the five years of Stilbestrol.

I used to wonder why nobody was investigating people like me. I thought then, that perhaps I was the only one, and what would be the point of finding out how five years of DES given to a teen might affect the rest of her life? Now I know there are a number of us who were stupidly experimented upon by, in my case, someone who really had no idea what he was doing. If there is any comfort to be had in any of this, it is knowing that I am not completely alone.

Published in the Tall Girls Inc. Newsletter in 2000