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

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3 Responses

  1. Can you tell me if DES given to a woman post-partum can have any affect on her subsequent children ? Is there any reseach that the DES is held in the body ( tissues, organs etc. ) for any length of time ? Also have you heard of it being given to dry up breast milk in a woman who is not going to nurse her baby ? I have a friend that gave her first baby up for adoption and she was given DES right after the birth to help dry up her milk. She had another baby girl about 1 1/2 or 2 years later and this daughter is 26 and has had 3 children. All her pregnancies have been very difficult to carry and she has had very hard and long labors. She also has a mis shaped uterus. If you have any information related to this, I would so much appreciate it.
    Thank you,
    Victoria Cain

  2. Victoria,

    The best information currently available says that DES only affects a woman’s baby if she is pregnant at the time she takes it (and also, that the severity of DES side effects are dependent on how long the mom takes it, how much DES she takes, when in pregnancy she takes it, etc.), and that DES does clear the body. This info is from the DES Action website, which stays up-to-date on everything DES, and would certainly have no reason to minimize the risks of DES. That said, the cynical/skeptical side of me wonders if that’s accurate, or possibly they just haven’t developed the right test for it. But that’s what we have to go on — supposedly there is no risk to subsequent pregnancies from a postpartum injection of DES. You can check out my other posts about DES (start at the last post and work your way up) for as much information as I was able to find out about this drug; and you can also check out DES Action for more information as well.

  3. I have recently come across information related to testicular cancer related to DES and prenatal vitamins. My brother was born in 1957 and died at 38 of a form of cancer which metastasized to the lungs but no one knew where it came from. It is a very rare cancer, papillary adenocarcinoma . As I understand Prenatal vitamins containing DES were given starting in the year 1957. Do you have any more information or direction for me to research.

    Thank you for any information.
    Kirsten Faith

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