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?

10 Responses

  1. Wow, this is a very telling post. I wonder if your grandmother did get it?

    I wonder how many things that are used on moms today have a long term effect like that? Or even obvious risks like cytotec. Scary to think about.

  2. Great post! I agree with the concern over “presumed innocent until proven damaging” with regard to current drugs, procedures, and tests prescribed for pregnant women. Most women are not encouraged to get second opinions or ask their pregnancy care providers for information on these things. Women are still socialized to give up power over their bodies . . .
    ~ Kimberly
    http://labortrials.wordpress.com

  3. I am 52 years old and my children are now having their children. When I was pregnant with my first child, in 1978, I was given the strongest anit nausea pill I could get. My daughter had her first baby in 2003 and she weighed 2lbs 6 oz and was 2 months early and she just gave birth to a 2 lb and 4 oz baby and just 6 month 3 weekds girl. She had 4 miscarriages between these to babies. My other daughter had a perfectly normal baby with no complications, full term, but I did not need the nausea pill with her. Could that pill have caused what is happening to my daughter now. I feels so quilty and am looking for an answer to this that is happening to my daughter.

    • Dear helen, I am 56 years old and I also took the anti nausea one pill a day for one month.My 30 year old daughter is having fertility problems, they did a test with a scope and couldn;t get past her cervix, now she is going to have an endoscopy in 6 weeks.I also feel guilty but at the time I was hospitalized with severe low potasium from throwing up and diahreaing at the same time.They told me it was better to get food to stay in me,I would nerver have taken this horrible drug if I knew the truth about it, and I ‘m certain you wouldn’t either. We love our daughters , but unfortunately in our country when there is money to be made , greed prevails. I will let you know what the new tests show. Best wishes and hang in there! Mary

      • I realize that this thread is several years old but I’m grateful to have found it. I was told many, many years ago by my gyno that I had a T-shaped Uterus and was asked if my Mom took DES. I asked my Mom and she said since I was her first child & she had never had prior pregnancies that there was no need for any drugs to prevent miscarriage, so the answer was no. She did however mention that the Dr. gave her what she thought was called an anti-nausea drug…1 little white pill daily.

        I did a lot of research but never saw anyone write about this until today when I saw Helen & Mary’s reply. The cause for the T-shape as far as I could find was always DES or some of the women (like myself) thought they were just a weird exception to the rule & had these physical symptoms randomly without DES exposure). I have been unable to get pregnant my entire life…I am now 43 years old and I have never been pregnant although we tried very hard for about 7 years. We gave up on our pregnancy hopes & this was all behind me until today.

        I received my chart & records from my gynecologist who is retiring so I could give them to my new Dr. I was perusing the pages and came across a note that stated I have a “cockscomb cervix”…I thought “what the hell is that?” This was the 1st time in the 15 years I went to that Dr. that I ever heard those words…yes she mentioned the T-shaped uterus but never the cervix issue. I’m pretty flabbergasted!

        Since it’s 2 different physical abnormalities that I seem to have then it makes me wonder if the “little white pill” that the Dr. gave my Mom was what she thought it was or was something else. Perhaps this “anti-nausea drug” caused my uterus & cervix deformities? Perhaps he actually gave her DES? Both of these issues are shown to have a direct correlation to DES. I don’t know what to think really…I was born in 1968 and my Mom’s Dr. has long since passed. I wouldn’t know where to find my Mom’s 43 year old maternity records if they would even still be on file in some hospital archive.

        I’m actually more upset that my gyno NEVER mention the cockscomb cervix to me in 15 years of care.

        Sorry to have written a novel…I’m just amazed that there are so many affected by this. And to the Mom’s who are feeling guilty about the medication they took while pregnant & now have daughters with fertility issues…please don’t beat yourselves up…it’s not your fault. In the 60’s & 70’s there wasn’t as much information available as there is now & you thought you were taking medication to help your babies/pregnancies. You did not do this on purpose to your precious children so please don’t be so hard on yourselves. I’ve come to a place of great peace about my infertility and we all have a different journey that we must go on in this life. I have no children but I have so many other wonderful blessings in my life! Thanks for letting me ramble on🙂 Be well everyone!

  4. Very informative, thank you..

  5. I too have been told I have a cockscomb cervix. I was born 10/19/78 conceived 01/78. I’ve not always noticed the cockscomb it has however seemed to have grown. if someone could please email me back I have some personal questions regarding this issue. My doctor has said its not a concern.

  6. I was born in 1965. I missed carriedy first child,but went on to have four more,two of which are identical twins. About 6 years ago I went in for my annual pap and pelvic exam. The doctor who checked me in a surprised tone stated that I had a coxcomb
    I asked her what that was. She just said that it was something that some women had… She wouldn’t go into any more detail. It has really blown my mind learning that it is a abnormality that I was born with. Thank you for the info…..

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