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?

More DES information

I promise I’ll get off the DES bandwagon sometime… but not today.

In my search for more DES information, I found the DES action website, and emailed it for more information. Fran Howell, the Executive Director of this organization, emailed me back the following letter. She answered all of the questions I asked, which I really appreciate — it’s a personal email, not a form letter. I am going to insert comments sometimes, and will set those off with italics.

Dear Kathy,

Yes, you are right – having a cockscomb cervix is a marker showing that you were exposed to DES before birth. You may never know how it happened because, as you note, the FDA told doctors to stop using it for their pregnant patients in 1971. [The FDA has also warned doctors not to use Cytotec for inducing labor, but they still do it anyway!]

That said, some didn’t get the message, while others really believed in DES and continued prescribing it because they thought they knew more than those officials in Washington DC. By 1977 one would have thought that no doctor gave a pregnant woman DES, but – it could have happened. [My mother was also given the standard 1950s hospital birth treatment, complete with general anesthesia against her explicit wishes — even begging — as well as pubic shave, enema, episiotomy, and forceps, so I wouldn’t be too surprised to know for sure that her old-school doctor kept prescribing DES even when there was no evidence for it, and all the evidence was against it.]

Then, there are vitamins. While your mother has no memory of taking a prescription drug during her pregnancy, DES could have been given as a prenatal vitamin. Many women take vitamins during pregnancy and her health care provider might have distributed them to her without much discussion. [When I asked my mom about this — whether she took prenatal vitamins — she said, “Of course!” I read one DES mother’s story that her vitamins in the 1950s cost $35 dollars each month… and their rent only cost $75 per month! Pretty expensive drug that doesn’t work, but causes harm, including cancer.]

Another possibility, which has not been studied, is that women could have been exposed to DES while pregnant if they ate a significant amount of beef, and especially liver, from cows whose growth was stimulated by DES prior to slaughter. DES was not banned for use as a cattle growth stimulant until 1980. [It’s possible my mom ate liver. I forwarded this message to her, and she didn’t mention anything about it. She doesn’t eat a lot of meat in general, but might have eaten more when she was 30. I don’t remember ever being served liver as a child.]

Also, pregnant women who lived on farms where DES was used with cattle are believed to have been exposed to DES second-hand, through their work environment. [At some point, my parents did keep some livestock — goats and chickens, as well as a cow or two. I’m not sure whether this would be enough exposure — if my mom might have handled the feed bare-handed while pregnant with me.]

DES is/was a potent synthetic hormone. Agricultural doses for feed or pellets did carry warnings that farmers were not to breathe any DES dust or expose it to their skin. As an aside, male workers at pharmaceutical plants producing DES developed breasts. To the best of my knowledge no public health review has ever been done of these men or their families. [When I worked at a pharmacy years ago, my pharmacist compounded DES capsules for an elderly man at a nursing home, for some cancer that he had. Although he hated the work of actually filling the capsules, he wouldn’t let any of us (who were all female) do it, because of the risk of absorption through the skin.]

However, it is most likely that your mother took “vitamins” given by the doctor or obtained from the pharmacy, not being told that these pregnancy vitamins also contained DES. Among some obstetric offices the use of these pharmaceutical vitamins was so common even the staff stopped thinking of them as having other ingredients. [This is not surprising. As a former pharmacy tech, I could testify to a lot of sloppy thinking by medical staff. Just like any other job, you just get so used to the routine of things that you don’t stop and think and question a lot of the time. I was guilty of that myself.]

As you recognize, doctors will tell you that you can not be a DES Daughter because you were born in 1977. It’s hard enough having been exposed, without having doctors tell you it isn’t possible. My heart goes out to you. [Yeah, I don’t exist. I’m “too young” to be a DES daughter, but apparently all other cases of cockscomb cervix are caused by DES. I know I’m unique, but not for this. Or else, why am I not in a research journal — “the only cockscomb cervix in the world without DES exposure!” No, I don’t believe I’m the only one. Nor do I believe I’m the only one born after 1971 who was exposed to DES in utero, in the U.S.]

I’ll send you a packet of information that tells you of the health screenings you need. They aren’t significantly different from that of unexposed women so you can probably find a health care provider who will humor you, and do them. Mostly, you need an annual Pap/pelvic exam (as recommended for all women) but yours will be slightly more comprehensive. I’ll include directions to bring your doctor to show exactly how it should be done for you. [Thank you for this information! I’ve got it, and it’s thorough, and I really don’t want to do it. Pelvic exams are bad enough, but having to do a recto-vaginal exam every year? Lovely. Thank you Dr. OB who gave me DES in utero! Just what I always wanted — an increased risk of cancer due to something that happened before I was born! And now I get some stranger sticking his hands up me. Every year. For the rest of my life.]

There is no registry for DES Daughters (except for one that holds information about those who’ve had the specific cancer linked to exposure). Most DES Daughters do not get that, but you’ll want your doctor to check for it each time you go in for your Pap.

I hope this answers your questions and I wish you all the best.

Respectfully,

Fran Howell
Executive Director
DES Action
www.desaction.org

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!

What you don’t know CAN hurt you

In one of our email conversations on our independent childbirth educators Yahoo group, we began discussing Diethylstilbestrol (DES), which is a synthetic hormone that was used to reduce miscarriages or help with other pregnancy problems from the 1930s through the 1970s.

The woman who brought it up said that she discovered when looking at her deceased mother’s medical records that she was given an injection of DES after giving birth to her, in order to dry up her milk. Her mother had told her that she couldn’t nurse her because she didn’t produce enough milk. She never realized that she had purposefully been given something to stop her milk production. Whatever happened to “informed consent”?

So, what’s the big deal with diethylstilbestrol? According to this article which appeared in the journal of the American Association of Family Practitioners, quite a lot! There’s a term that I became familiar with a few years ago called “DES daughters.” These are females born to women who took DES when they were pregnant. This AAFP article told me quite a few new things, including that the sons of women who took DES are also affected. Here’s a list of things that maternal exposure to DES can cause in daughters:

  • clear cell adenocarcinoma
  • structural reproductive tract anomalies such as
    • hypoplastic cervix
    • cervical collar
    • pseudopolyp on the cervix
    • vaginal adenosis
    • T-shaped uterus
  • an increased infertility rate
  • possible increased risk of breast cancer
  • poor pregnancy outcomes including
    • spontaneous abortion
    • ectopic pregnancy
    • preterm delivery

And “DES sons” have an increased risk of genital abnormalities (including epididymal cysts, undescended testes, and small testes) and a possibly increased risk of prostate and testicular cancer (small and/or undescended testes are associated with testicular cancer), as well as sperm and semen abnormalities (although no increased risk of infertility.

After talking about adenocarcinoma, the article states, “Other adverse associations have been identified in DES-exposed women and their offspring, and animal studies have shown effects in the next generation (grandchildren).” Although no studies have shown an increased risk in humans for cancer in the next generation, reproductive tract tumors have been shown in multi-generational mice offspring.

You may be wondering why I’m concerned about this, since DES went out in the early 1970s (1980s in some foreign countries), which means that most DES daughters are 38 or above and are likely not having babies any more. I have two reasons, and the first hits very close to home.

When I was first pregnant and had my first cervical/vaginal exam (at 27!), the midwife noted that my cervix is “cockscomb”. The midwife asked if my mom had taken DES when pregnant with me, so I asked my mom, and she said absolutely not. So how did I get a cockscomb cervix? My midwife called it “a variation of normal,” but a quick Google search of “cockscomb cervix” shows that every document mentions it in the same breath as DES exposure. When thinking of DES, and looking into this question, I’m not 100% certain if DES daughters or sons refers only to those individuals who were fetuses at the time when their moms took DES, or if the drug could have caused problems with that child, and all future children. If the negative side effects can trickle down to grandchildren, it makes me think that it might stay in the mother’s body long enough to affect future fetuses, but I can’t be sure. At this time, I’m thinking I must have been exposed to DES somehow, but my mom didn’t take any drugs during any of her pregnancies, except one aspirin one time when pregnant with my oldest sister because she had a horrible headache. So how did I get a cockscomb cervix? Was my mom given DES without her knowledge and consent at some point after having given birth — similar to the woman mentioned above? (This would have been very easy, considering she was put under general anesthesia for all four of her vaginal births, against her consent.) Except that DES stopped being prescribed for pregnant women in 1971, due to an FDA warning against it… but does that mean that it wouldn’t have been given in the immediate postpartum? But this would presume that DES can stay in the woman’s body long enough to affect future pregnancies, when it appears from most things I’ve read that DES must be given during that pregnancy in order to affect that child.

I’d not heard of DES being used for drying up milk. My mom was given something to dry up her milk after she had her first child–even though she had told the nurses that she planned on nursing him! She dutifully took the medicines she was given, and then after a day or two, she realized that the “little black pill” was missing. She asked why it wasn’t there, and was told, “Oh, that was to dry up your milk, and we found out you were nursing your baby.” I still don’t know what the medication was (but would dearly love to know!). Even though it was after DES had fallen out of use, the hospital was so backward, that it wouldn’t surprise me if they still routinely used DES, just like they insisted on putting my mother under general anesthesia for all four of her births (from 1970 to 1977).

But my mom and her two siblings were born between 1944 and 1947, which was when DES was in general favor with doctors, so it’s possible that my grandmother was given DES–although my mom is not aware that my grandmother had any miscarriages, threatened miscarriages, or spotting (which would be the only presumed reasons to give DES). Do I have a cockscomb cervix because I’m a DES daughter or granddaughter? I’d dearly love to know. Are my sons at increased risk of testicular problems because of a drug my grandmother took sixty years ago? These questions are troublesome to me. My oldest sister had a uterine malformation–a septum dividing her uterus in half–that was blamed for her three miscarriages (although there was also the possibility that she had low progesterone). She had laparoscopic surgery to remove it, and went on to have two children (although she used progesterone vaginal suppositories, just to be on the safe side). Was her problem–be it a malformed uterus or multiple miscarriages–caused at least partially by DES exposure? Is she a DES daughter or granddaughter?

I said above that I had two reasons for being concerned about DES. This is the second reason: According to the article referenced above, it was proven in 1953 that DES did not work to reduce miscarriages or other pregnancy problems, but it was still prescribed until 1971, when the connection between it and adenocarcinoma was established. So women were given this drug for twenty years after it was shown not to work for the reasons prescribed. Twenty years of daughters and sons (and who knows how many grandchildren) were exposed to this drug that is now proven to be harmful. This article is a small research study that shows that, in addition to the ill effects mentioned above, DES daughters are at increased risk of anxiety and depressive symptoms, diminished well-being, more problems with relationships and sexuality, menstrual disorders, hypothyroidism, possible altered immune systems, and allergies and auto-immune disorders. It was prescribed for twenty years after it was shown not to work!

I can see doctors prescribing this medication–even knowing it didn’t work–on the assumption that it had no negative side effects, and it just might help. But this drug did have negative side effects, but finding out what the problems were was too far out in the future. I mean, breast cancer takes a while to develop (DES women are at slightly increased risk), and who examines the reproductive systems of newborn girls to see if they’re normal. No, you don’t even find out about this until some 20-30 years after the fact, when all of a sudden there is an increase in the rate of infertility, miscarriage, etc. “Presumed innocent” should be reserved for accused criminals, not for drugs!

What other drugs or procedures and tests are presumed to be safe, or at least, that the benefit offsets the risk? X-rays used to be used on pregnant women until it was discovered that it increased the risk of childhood leukemia. Bad assumption. It seems like that would be the assumption–that radiation would cause cancer, since it was known ever since Marie Curie died of cancer from playing with radiation too much as one of its first discoverers. Thalidomide was routinely given to pregnant women to help them combat nausea, until it was finally discovered that the drug causes serious birth defects–usually missing limbs. It was previously assumed that the placenta acted like a barrier against any negative side effects from drugs. Bad assumption. What other assumptions are doctors operating on, when they practice medicine?

Dr. Marsden Wagner has said, “there is a fundamental difference between the practice of science and the practice of medicine. To generate hypotheses, scientists must believe they don’t know while practicing doctors, to have the confidence to make life and death decisions, must believe they do know.” The doctors that prescribed DES, thalidomide, X-rays, formula-feeding, etc., all believed that they knew. What does your doctor believe he or she knows?

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