Tuesday, August 15, 2006

Diethylstilbestrol/DES

"Diethylstilbestrol (DES) is a drug once prescribed during pregnancy to prevent miscarriages or premature deliveries. In the U.S. an estimated 5 to 10 million persons were exposed to DES from 1938 to 1971, including pregnant women prescribed DES and their children. In 1971, the Food and Drug Administration (FDA) advised physicians to stop prescribing DES because it was linked to a rare vaginal cancer." (http://www.cdc.gov/DES/)

Fifty-three years ago, my grandmother was one of the women who took DES to avoid miscarriage. Following several miscarriages, her doctor was very cautious during her pregnancy with my mother. "Do not gain weight," he told her. (She gained a total of 9 lbs with a 10 lbs baby!) "If she would stoop she could lose the baby," he told my grandfather. Given the wide use of DES in 1953, it is not surprising that she was prescribed to use this along with the other precautions.

I have known for years that my grandmother took this drug and that it did in fact effect my mother. After her first miscarriage she learned that she had an incompetent cervix. For both me and my brother, she had a stitch put in her cervix early on to prevent a miscarriage. Before getting pregnant, she had other gynecological issues...maybe they were tied to the DES as well.

Last year when I was dealing with the brunt of fibroids, I was reading a good deal about what it meant. Afterall, everyone was telling me that I was way too young for the severity of my fibroids. Nick's Mom gave me my greatest resource, " Fibroids: The Complete Guide to Taking Charge of Your Physical, Emotional, and Sexual Well-Being." A small blurb in the middle of the book links fibroids and DES:

"Almost 30 years after it was banned, new research is showing that DES can increase the risk of tumors [fibroids] in the girls-now women- who were exposed. More chilling, the daughters of those women may be affected as well, possibly because the drub damaged the DNA passed down from one generation to another." (page 149)

Many people do not believe that DES can effect the third generation. But, given that the third (my) generation is only now coming in our twenties and thirties its hard to say what they know. It took 30 years for them to see some of the links in the second generation.

Obviously, with all of this information, I've been aware of the possibility that DES has potentially effected me as well. I've always known that as soon as I do get pregnant that obnoxious or not, I was going to make my doctors pay attention to my cervix. Perhaps women who were prescribed more of the drug are more likely to have granddaughters who also suffer the effects. Who knows.

Recently, I learned of another DES-granddaughter. After struggling to get pregnant, she saw an Endocrinologist. DES is considered an endocrine disrupter. After seeing the Endocrinologist, she got pregnant in two months only to lose the baby six months later because of an incompetent cervix. She was stitched for the next two pregnancies.

DES-granddaughter. That's me. And I don't know what that means. I am half tempted to volunteer for a study. DES was a synthetic estrogen. It makes you think twice about what you take now...especially when you're pregnant. Which I am not, after about a year of trying. Maybe it is a factor. Maybe it isn't. It could be the fibroids, DES, Nick, the UAE or nothing at all.

But say that it is DES, who am I going to be mad at? My mother, who is also a victim? No. My grandmother who took the drug? No. Her doctor that prescribed a popular drug 12 years after it was on the market? No. There are DES lawyers out there. Even now, 35 years after they stopped prescribing it, when I google DES, DES lawyers is one of the first to pop up. I can't really understand the value of that approach.

Guess we'll just wait and see (and continue talking with my doctor and researching the topic.) I often wonder, if this is my fate, what am I going to do with it? One thing that I know is that if it has happened to me, it is likely happening to someone else as well. My experience and knowledge may be helpful. I do know that my UAE experience changed the UAE conversation in this area a bit. Maybe my DES-granddaughter experience will as well.

2 comments:

Anonymous said...

Did you ever find more information out about being a DES granddaughter? I just found out and am having some problems with abnormal cells. I was wondering if you found a study?

Charity said...

I am a DES granddaughter as well. At the age of twenty I struggled with fertility issues. At the age of 22 I finally went and saw a doctor who did blood work and said that everything was within normal range. I have always had periods, so with that doctors say that I must be ovulating. But really? I couldn't get pregnant still. Finally after taking Clomid, I conceived my first child at the age of 22. A year and a half later we tried again for six months. Nothing. Then I went to the doctor once again who put me on Clomid. At the age of 24 now I was pregnant with twins. My doctor doesn't know why I can't do it on my own and that I will always need fertility drugs to get pregnant. It was found at 22 that I have a cyst on my right ovary. So here I am 32 and was told I couldn't get pregnant on my own, only to find out a few weeks ago that I was pregnant. This baby will probably be the death of me. So far I have had to get an ultrasound because my uterus seemed bigger than 7 weeks. Everything turned out fine other than the cyst on my right ovary. Now I just got my labs back and my progesterone level is a 6 and it should be 20. I know have to take prometrium and progesterone vaginal suppositories. I didn't have this problem the last two pregnancies, but this is the first I conceived on my own. I really do think that all these years it has been related to be in the DES generation passing from my grandmother to my mother and now to myself. My hope is that it doesn't pass to my daughter!