I don’t exist…

Because I was conceived several years after doctors were supposed to stop prescribing DES, I’ve been told that I can’t possibly have been exposed. But everything I’ve read says definitively that a cockscomb cervix only occurs with in utero DES exposure. So I’m an impossibility. I don’t exist… because I can’t exist. Not in the world that is obstetrics and gynecology, anyway. Not with “in the box” thinking. My existence (or, more specifically, the existence of my abnormal cervix) puts doctors on the horns of a terrible dilemma: either one of their own stupidly and/or arrogantly prescribed drugs which were shown not to work and also to be harmful, or I am the only case of a cockscomb cervix that was not caused by DES. Both of these are impossible in their minds, so they don’t even try to reconcile the two. They do not attempt an explanation. They just say that I couldn’t have been exposed–I’m too young. But they can’t find another example. What I want is proof that a cockscomb cervix can form in the absence of DES. Until then, I’m going with the simplest and easiest explanation: they screwed up. Doctors blindly accepted what other doctors said. They blindly accepted what drug reps said. Some continued to prescribe it even when they were warned by the FDA to stop. But this behavior by doctors didn’t stop in 1977. They’re still doing it. Not with DES, but with other drugs and procedures. They’re playing with fire, but it’s we who get burned.

Accept nothing. Believe nothing. Question everything.

Here is the last letter I received from Fran Howell, Executive Director of DES Action:

You are not alone – there are other DES Daughters who were born after 1971 – and so you share in common with them the problem of having doctors tell you it isn’t possible. Most doctors dismiss DES exposure as not a concern – even for those who were born in the timeframe and clearly were exposed. That’s going to be a burden for you throughout your life. [A woman from my Independent Childbirth Educators email group told me of a case she was personally familiar with, of a girl born in 1974 who had been exposed to DES in utero. She died of adenocarcinoma when she was 12. She was born 3 years after the warning was issued — not a ban — a warning. We are here. We exist. We want answers. We want recognition.]

The increased breast cancer risk for DES Daughters starts at age 40 – so you’ve got a few years to calm your fears. I do understand about not wanting to go through the experience. None of us like it. But even if you weren’t exposed – as a woman you have a risk for the disease so at some point you’d have to make peace with your concerns and get a mammogram.

One thing newly diagnosed DES Daughters do is wonder if everything is related to exposure….

I’ve certainly fulfilled this last statement! Everywhere I look, I see evidence of DES exposure. I think about how an entire generation of women had greater problems with infertility and pregnancy, thanks to DES. I wonder how these abnormalities have affected the way OBs practice. Do they accept as normal a certain rate of infertility, ectopic pregnancy, miscarriage, multiple miscarriage, stillbirth, preterm labor, premature birth, etc.? All of these things can be caused by or exacerbated by DES exposure. Are they operating under the impression of a false normal? Are they fearing a certain rate of pregnancy problems, and working to prevent them… when they’re not normal? and they may not be able to be fixed?

One of the things that really irritated me in doing some of the initial DES research is the number of times I read that while DES can cause a whole hat-full of reproductive-tract disorders in both DES sons and daughters, they frequently dismissed the concerns about female infertility by saying, “But most of these problems should be able to be corrected with fertility treatments,” or “most women will have success…” or some such wording. They just don’t get it, do they? I read the infertility blogs on wordpress. I tag-surf for it. I hear the struggles, the anger, the depression, the cries of “why me??” echoing from every part of the blogosphere. And these insensitive docs just blithely dismiss it as not a big problem! I read about women who have had to have rounds and rounds and rounds of various treatments–Clomid, Gonal F, IVF, IUI–plus some names and abbreviations that I don’t even know what they stand for nor what they mean. I read their difficulties when they wonder how in the world they’re going to be able to afford their fertility treatments, but they don’t want to give up just because of money. So, yeah, given unlimited time and resources and money, most women will eventually be able to conceive. But who has that? And then, there are the stories of multiple miscarriages, “chemical” pregnancies, stillbirths, and so on. Stuff I don’t even want to imagine, but I know is a daily reality to a lot of women.

I have reason to believe my oldest sister was also exposed to DES in utero; which means there is a strong possibility that our other sister who is between us in age was also exposed. If my mom was prescribed DES-laden prenatal vitamins when she was pregnant with me in 1976, five years after the warning to stop prescribing DES to pregnant women, why wouldn’t she have been given them two years earlier? My oldest sister had three miscarriages — they made her have that many before they would refer her to a specialist to see what the problem was. She was one of the fortunate ones — her problem was easily diagnosed and repaired. She had a septated uterus, or a septum in her uterus — in plain English, her uterus didn’t develop normally, leaving a little “wall” down the middle of it that shouldn’t have been there. Some DES-exposed babies developed bicornate uteri — “two horns” — which also frequently causes miscarriages, infertility, and preterm birth. It is my understanding that a septum is a much milder form of this abnormality, but I could be mistaken. Even though she was born in 1972, so could have been conceived prior to the FDA warning, it was never suggested to her that her abnormal uterus was possibly due to DES exposure. I guess it’s a good thing she didn’t die of adenocarcinoma or cervical cancer before she found out!

If DES was given a “free pass” and was “innocent until proven guilty” (and prescribed at least occasionally even beyond that), it just makes me wonder what “wonder drugs” are out there now, or in the near future, that will be given to millions of unsuspecting people, and cause who-knows-what problems with them. Or with their children. Or with their children.

Yet some people seem to make fun of natural-birth advocates — those of us whose goal it is to give birth without any drugs. Most of us also tend to stay away from drugs at other times, or use them much more rarely than the general population. Some people mock us as if we’re too stupid to know that medicine can help. That’s not it. We’re just smart enough to know that medicine can sometimes hurt. We weigh the risk very carefully. The known risks of epidural are low. But it’s possible that there are unknown risks. Epidurals have benefits too. Whether the known benefits outweigh the known and unknown risks is something for you to decide. What you don’t know CAN hurt you. What you don’t take can’t.

I have an increased risk of breast cancer, vaginal cancer, cervical cancer, ectopic pregnancy, stillbirth, preterm birth, preterm labor, premature rupture of membranes, and am automatically considered “high risk” for pregnancy (which I’m glad I didn’t know about before I had my two safe, natural, uncomplicated home births) due to a prenatal vitamin my mother took 32 years ago. What are you taking that you don’t know about?


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!