This seriously bugs me

While working on a totally unrelated post, I came across this study which shows that DES daughters (women exposed to DES while they were fetuses) have a higher risk of preeclampsia. This is in addition to the higher risk of and incidence of reproductive tract problems, infertility, ectopic pregnancy, preterm birth, vaginal cancer, breast cancer, etc. Since I apparently am also a DES daughter, I’m taking this very personally.

A brief synopsis, in case you don’t want to read all of the previous DES posts: I have a cockscomb cervix, which as far as I can tell is only ever attributable to DES exposure. I must be either a DES daughter or granddaughter. I was born in 1977, six years after the FDA issued a warning against prescribing DES to pregnant women, because they finally figured out after 40 years of using it, that not only was DES not helpful (for preventing miscarriage, supposedly), but it caused some babies exposed to DES in utero to develop vaginal cancer in childhood or adolescence. (It makes me wonder what else is being pushed onto the masses with no possible way to know of any long-term damage, and when we’re going to finally find out that the “cure” is worse than the disease.) So, I’m too young to be a DES daughter… yet my cervix tells a different story. My mom took prenatal vitamins with me, but no drugs. DES used to be formulated into PNVs. The other possibility is that I am 3rd-generation, which means that my mom is actually the DES daughter, and my grandmother took it when she was pregnant over 60 years ago. The only problem with that scenario is that my grandparents were dirt poor, and at that time, DES was exhorbitantly expensive — I forget the exact number one lady remembered, but it was more than her rent or mortgage at the time. Also, my grandmother never experienced a miscarriage or a threatened miscarriage, which would have been the main reason for it to have been prescribed then. (It wasn’t until the 50s that DES was really pushed for “healthy babies” instead of supposedly reducing miscarriage rates.) It’s unlikely that they could have afforded it; and my mom said something like my grandmother didn’t want to be pregnant, so wouldn’t have taken drugs to avoid a miscarriage anyway.

My oldest sister had a septate uterus, my other sister was recently treated for precancerous spots on her cervix (dysplasia) — both of these are more likely in DES daughters. Did my mom take DES with all of us? Or was she a DES daughter, and passed on some problems to us? My mom’s sister had one pregnancy, and had such a horrible case of toxemia (as it was called then) that her doctors told her never to get pregnant again. My cousin was born early (I’m thinking a month or so early) after my aunt went into seizures unexpectedly. My cousin had such horrible “female problems” that she got a hysterectomy in her mid-20s, because she couldn’t handle the symptoms any more. She experiences bouts of depression related to that, and not being able to have any more children, and now wishing she’d tried alternative therapies. Is it common to have so many gynecological problems in one family? My mom’s and my sisters’ and my pregnancies and labors were all uneventful, as far as that goes… well, except for my oldest sister’s three miscarriages prior to her uterine surgery. And she went on progesterone, in case it was hormonal, not structural.

Ok, enough of following rabbit trails. Back to preeclampsia.

When I first started researching DES, the thought struck me, that with all the people who were exposed to DES, that could seriously change some statistics, if DES caused problems. Since DES was in PNVs, how many women took them without realizing it? How many children (now adults) were really affected? The most common estimate is 5-10 million people. If half that number is female, then 2.5-5 million women were affected by it. Supposedly, those women are past the age of childbearing for the most part, so it shouldn’t be a problem any more, right? Well, what if it affects the DES daughter’s offspring? From what I can tell, one small study concluded that there was little difference between exposed and non-exposed granddaughters. But I don’t like the sample size of it — I think it’s just too small.

This is, I think, an important point: if being exposed to DES increases all of these problems, then DES exposure ought to be considered as a separate factor, when looking at women with these problems, or looking at the mass of women as a homogeneous group. If being exposed to DES in utero doubles the risk of developing preeclampsia, then that needs to be considered in trials that look into preeclampsia, and whether or not certain factors are involved in the development or continuation of the disease. One problem is, most people probably wouldn’t know if they or their mothers were exposed to DES or not. Really, the only way to tell would be to look at the mother’s or grandmother’s prenatal records, and see if DES was prescribed. But, come on, who has access to 60-year-old doctor’s records? I doubt if doctors or hospitals even keep them longer than 20 years, unless required by law.

Was I or my mother ever exposed to DES in utero? I suppose I’ll never know for sure. But one thing is for sure — it really bugs me that it was even done. A whole generation, or two, or three is now saddled with the sad effects of this legacy. Over-eager, over-active, over-zealous doctors who thought they knew everything, and thought they could improve on nature by giving women extra hormones, simply because they could. The dosages of these hormones was mind-boggling. And it caused a lot of men and women to have reproductive tract problems. And it increased their risk of cancer. It took from 1938 until 1971 for scientists to actually figure out that DES caused these problems. What will we find out about tomorrow?


DES update

This is a letter I just wrote the the CDC DES update page:

To whom it may concern,
I would like for the government to look into and admit that DES was prescribed by some doctors even after they were told to stop prescribing it. I was born in 1977 and have a cockscomb cervix, which is an evident marker of DES exposure. What I’ve read in the past few days about DES makes me *sick*! There is no other way to describe this pit in my stomach, when I realize that I was given a drug as a fetus that caused my cervix to develop abnormally, and my mom’s doctor ought to have known that it caused reproductive disorders.
I cannot be the only post-1971 victim of this drug. People like me–and all others who have reproductive disorders that may possibly be caused by DES exposure–need to be informed that the 1971 ruling was simply a warning, and not an outright ban. DES was not pulled from the market. In fact, when I was a pharmacy tech about 8 years ago, we used DES (the pharmacist had to compound it, and wouldn’t let any of us techs who were all female even touch the powder) for an elderly man in the nursing home who had a specific type of cancer.
We, and all my DES sisters and brothers, need to know that they may have been affected. Doctors need to know that post-1971 babies can be DES sons and daughters as well. Women need to know that their problems with infertility, miscarriage, stillbirth, and preterm birth may be related to DES, and not “just one of those things.” Even more, it needs to be publicly proclaimed because DES exposure increases the likelihood of certain types of cancer. By not telling the full truth, women supposedly younger than 36 or so will not know that they too may be affected, and that they need more careful gynecological care. By not doing so, our lives may be at risk.
Thank you for your time and attention.

You are not “too young” to be a DES daughter!