More DES answers

After the Executive Director of DES Action wrote me her previous letter, I asked her if I could post it on my blog, and she graciously agreed. She read my first post, which was more questions than answers, so I thought I’d post her second letter as well, since it contains more information and answers my questions.

First is part of my letter to her, which I am posting because it has some specific questions:

….My main reason for doing this is to reach women of childbearing age who be DES daughters but wouldn’t know it because doctors assume they’re too young, having been born after 1971. It also would contradict (with a bit more authority than just my say-so) the prevailing implication on the web that DES was banned in 1971, rather than just “warned against.” I know that DES is still available to be used (I used to work at a pharmacy, and we had to compound some pills for an elderly man in the nursing home for cancer [Note–DES is no longer available–that was a mistaken assumption on my part, as is shown by the next letter]), but do you have a date for which it would almost definitely never have been used on pregnant women–an effective ban? Obviously, it was used by at least my mom’s doctor as late as 1976, but could I be the last of the DES daughters born? Or could there have been more after me–up until the ban in cattle feed, for example? I’ve read from numerous sources that 5-10 million women took DES from 1938-1971; but if it was in 200 products including PNVs, then that number seems a little low–especially with the “Baby Boom” being chief DES years. There is the implication that babies after 1971 can’t be affected, but I’m proof that’s incorrect. How many more millions of women and babies have been affected after “doctors stopped prescribing it”?

And now her answers:

Your blog is very thorough and well informed. Yes, most certainly you can post my response. If possible, please also include the DES Action web site: www.desaction.org. It is a good resource and has been kept current on the latest research.

For example, you reference the possibility of DES Daughters having an increased risk for breast cancer. Since the article you read came out, that increased risk has been proven true – so it isn’t just a possibility anymore. DES Daughters need to know that, so they can stay vigilant in getting mammograms. It’s easy to skip a year because nobody likes getting them. But, if you know you are at increased risk for the disease it is most likely that you have a mammogram every year. That’s why DES Daughters need to know of their exposure and stay current on the latest information about it. Your blog certainly helps get the word out.

I have a question for you – when did you work in the compounding pharmacy? As I understand it, while DES was contra-indicated for pregnant women in 1971, the FDA finally acted in 2000 to withdraw its approval of DES, which is when, as I was led to understand, DES was no longer available for any human use after that. (DES was used for prostate cancer but in recent years other drugs have become more popular for that use. Also, DES was used to soften tumor tissue in end-stage breast cancer treatment – as a palliative measure. Those are the only two recent uses that I know about and none involved pregnant women).

My guess in your case is that your mom was exposed to DES in some way while pregnant with you – and we may never know how. But I don’t believe the DES shots she was given to dry up her milk is what has caused your cockscomb cervix. That’s because DES works on the developing fetus as the reproductive organs are being formed, usually early in pregnancy. Your mom’s exposure after you were born could not have affected you in that way.

Also, scientists tell us that DES leaves the body so it isn’t likely to have affected your development if your mom had DES shots a year or so earlier. But you should urge your mom to never skip a mammogram because DES mothers have a slightly increased breast cancer risk. In her case it doesn’t matter when she was given the drug (pregnant or not) because she was exposed to it.

The real villains in this story are the greedy drug companies. Because DES was not patented and was easy to make, all sorts of different pharmaceutical companies produced and promoted DES to doctors. In the late 1940s animal studies showed it caused cancer in laboratory mice. That should have been a warning sign but it wasn’t. Then in 1953 a scientifically valid, journal published research study showed that DES did not work. Some doctors read it and stayed away. But, drug companies swung into action. For many years afterwards they promoted DES use to doctors in medical magazine ads, in trinkets and notepads, in lectures and junkets, etc. In the face of so much positive advertising, doctors who’d read the research started forgetting about it. Clearly it was easy to believe the sincere drug reps who came to their offices every week with lunch and gimmies. Unfortunately, that’s how doctors learn about drugs – even today. Our system is screwed up. [As a former pharmacy tech, I can testify to this as well. We could always tell when the drug reps came through town — all the doctors would change all of their patients to the newest wonder drug.]

On the DES Action web site we try to make clear that Big Pharma is to blame for the DES tragedy. On the home page, front and center, is a picture of a baby and if you click on it you can learn about that so-called Healthy Baby Ad. On the right side of the home page is a box saying we have been waiting for an apology from drug makers. The clock ticks off the time as it goes by.

So, I hope this information is useful to you. I’ve put a packet of information in the mail to you so you can watch for it soon. Let me also put in a plug for our organization. I hope you consider joining (a membership form is included in the packet) – so you can stay current on the latest about DES exposure. You clearly are seeking information and understand it when you read it. Thank you for posting to your blog so others can learn, too. Information really is power when it comes to DES exposure.

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Wonderful Penny Simkin article!

One of the blogs that I have on my “feeds” is American Mum, and today she posted a link to an article about Penny Simkin that appeared in The Seattle Times. I read it, and it’s great! I like how it blends in a historical perspective — including snapshots of the typical hospital birth experiences through the decades, as it talks about the rise and fall of various procedures, including twilight sleep, general anesthesia, when men were banned from the birthing area, etc. — to create a backdrop for birth as it is today. But this article is about more than that, talking about aspects of Penny Simkin’s work as a doula, childbirth instructor, and author. It’s a wonderful article, and everyone who has ever even thought about having a baby should read it!

One of the things I liked most about the article, is the statement from the T-shirts that she designed: “How Will She Remember This Birth?” These were shirts for doulas to wear to hospital births, to remind nurses about how important it is for women to feel safe and protected, and to be treated well in labor. It reminds me of a former post of mine about the importance of a woman’s feelings about her labor, and it’s nice to see a confirmation of my belief backed up by such a reliable and knowledgeable source.

The fact that women accurately remember their birth experiences for long periods of time — perhaps all of their lives — is based on Penny Simkin’s following up with several clients from the early years. She had saved their birth experiences from twenty years before, and was able to track down 24 women and interviewed them again about their birth experiences. It was remarkable how close the original stories were to the stories recounted twenty years later. Many women carried the same feelings that their birth experience evoked with them, and some enjoyed retelling the story, while others broke down in tears at remembering the shame and negative feelings they had, because of the way they were treated. Twenty years later, they were still crying about their treatment at birth. Oh, yeah, it’s important!

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

Vote early and often!

On ideablob there is a contest, and BOLD (Birth on Labor Day, by Karen Brody) is in the running. Right now, it’s in 3rd place, and voting ends on March 31st. I’m not sure how often you can vote, but it’s at least once day, and possibly more frequently than that. You do have to set up an account, but it’s free and painless. 🙂 Let’s spread the word!

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!

All too common…

Here is an article from the UK that is making the rounds. The title is Not a Happy Birthday, and is a story of what one woman endured at the hands of her midwife, during what should have been an uncomplicated birth. It is not a “feel-good” read, but birth trauma has become too common these days to be ignored. Most women aren’t victimized in this way during birth, but some are. Even one is too many. Unfortunately, I’ve read many stories that corroborate this woman’s experience.

From what I’ve read of typical hospital birth in the 1900s, I would say that birth trauma used to be commonplace until general anesthesia for vaginal births was finally stopped. In the era of “twilight sleep” women were given drugs (at their request!) to dull the pain and to make them forget the experience. These drugs made the women act like animals, and were routinely tied to their beds. This was also the era of near-100% episiotomy-and-forceps births. Even as twilight sleep went out of fashion and general anesthesia became “the drug of choice,” the intentional (and almost completely unnecessary) cutting of a woman’s genital area and pulling her baby out by the head with cold steel forceps remained. This kind of birth was traumatic, although the women weren’t awake to experience it–they were just left to deal with the pain of the stitches and the discomfort of having their pubic hair grow back in. This is the kind of birth that my mother had, all four times, and she is basically terrified and/or nervous about birth. She has no knowledge of what it was like to give birth, and only knows the pain of labor contractions and the pain of recovery from this artificial way of “giving” birth. There is a term called “body memory” which if I understand it correctly, is the idea that your body remembers what was done to it, even if you were not fully conscious or don’t have a mental memory of it–either because you were knocked out, or the body part was numbed, or you were too young to remember it. The existence of the term makes me wonder about the past generation of women…

Now, today, we have too many birth professionals who seem to view birthing women as machines that are just supposed to spit out babies, regardless of the conditions, or how they are made to feel. If the woman doesn’t dilate according to the charts, or doesn’t push her baby out according to the statistical average, she is labeled “failure to progress” or “pelvis too small,” when the reality is, women are not machines. We are human. We need to be treated humanely at all times, but especially during birth. When we give birth, we are at our most open and most vulnerable–not just from having to be at least partially unclothed in order for the baby to come out, but also because of the hormones involved in starting labor and keeping it going. The chief hormone is oxytocin, which is the hormone also present when we breastfeed and when we make love. The vulnerability you have with your husband when making love is similar to the feelings you may have when giving birth. (Many women relate this lack of inhibition and say, “I didn’t care who was there, or what they could see!”) Unfortunately, hospitals are not very good at having an environment that encourages this openness, this vulnerability, this production of oxytocin. (Which is why labor often slows down when a woman enters the hospital; increased anxiety [“this is really IT!”] also plays a role.) And, as this article points out, this vulnerability can be used against women, to force things upon them that they would not otherwise accept.

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?