Wondering how many of us were exposed to DES (diethylstilbestrol) before birth. DES is a synthetic hormone given to a lot of pregnant women up till the early 70's. Does the US medical system (endocronoligysts etc) recognise a link between DES and immune system health problems?
We hear nothing about the DES daughters & clear cell carcinoma tests in Australia. Or about our need for annual mammograms after 50, or the link between DES and autoimmune diseases. I only found out through having breast cancer and looking on the net LAST WEEK - found the lump myself. Makes me feel mad
Hi Jan,
I'm so sorry to hear of your recent diagnosis. I wish you the best in your next journey. Life does suck sometimes, doesn't it?
I know that there are two of us for sure that had DES exposure. What are the odds that we would both be named Cathy (justsaynomore) as well. I'm sure you'll hear from the other later today.
I was exposed in 1959 and had one scare in my early 20's, had a biopsy, etc. but it was fine - kind of worried me for quite a few years though and I'm still a fanatic about annual paps, even if they've been normal ever since. At the time, the risks seemed to be centered on women in their late teens and 30's (if I remember correctly), so once I hit an older age, I kind of put it out of my mind. Then when I was diagosed with RA in 2007, I did some searching and found a possible link between DES and autoimmune as well. I haven't told my mom that though -no reason to make her feel bad. She already feels bad that she exposed all of us to this and it was no fault of hers. If it makes you feel better, here in the states most doctors don't really do any different testing or screening - or at least not that I've experienced - except for one time about 15 yrs ago I went to a different clinic and that doctor did a different kind of pap test due to DES - first time a doctor did anything different due to DES. I do have mammograms yearly and have since late 30's, but never realized that it was recommended due to DES - sounds like it's good that I've done that on my own. There were so many exposed, but you never hear much about it anymore - which I find odd a little because so many of us are now approaching menopause and I have to wonder whether new risks will surface or already have and we just don't know it. Well, that's probably enough for now - I may need to do some more internet searching on the links between the two.
Take care
Cathy
I am a DES daughter (exposed in 1951) but I don't know if it has anything to do with my autoimmune issues or not. My older sister has RA and she was not exposed to DES. I also did not know DES could cause breast cancer. I never heard that although it's been pounded into women here for years of the importance of monthly breast self-exams and regular mammograms. That advice was for every woman, not just DES daughters. Pap smears are also pushed constantly, with good reason, but I would get them even if I was not a DES daughter.
I asked my OB/GYN about my risk at this time for vaginal cancer due to the DES. He said I would have contracted it long ago if it was going to happen. I'd like to think he's right about that and at the time I believed him, but as I've learned more about the medical profession, I also learned that there are many things they just don't know.
3 DES daughters on one board?
I'm thinking those are high odds.
Pip
Link below for DES FAQ's - brief information, but highlights link to autoimmune, breast cancer (over age 40) and recommendation to not use HRT therapy. I'm not quite ready for HRT yet, but best to look into that before I have to make a decision. Now I'm glad I've always been persistent on annual pap and mammogram.
you can add Justsaynomore...I know she is well informed about the effectsJanalex - my Mother discovered the 1971 Life Magazine article which exposed this horror, and I was immediately hauled off to the OB/GYN for the beginning of a long period of going on full checks every six months. I have gone dsyplasic (sp) three times, resulting in three cyrosurgeries. My cervix is so scarred up doctors bring the staff in for a look, seriously.
I would direct you to the American Center for Disease Control, as they has a full section on DES, which was launched about 8 years ago. I was active in the DES Action group for a short period of time back then and helped promote the site, before I started going into autoimmune symptoms.
The Koller? Knoller study of 1988 is the first reference I can find about this developing class of special patients - DES exposed, later life autoimmune disease victims. Best of luck, I will be thinking of you. Take care ~~ Cathy
Edited to add I typed thinking only CathyMN had answered you, and now you have gotten a host of great new information. I am positive this is going to soon be a rapidly-developing group of victims, even though it was given to stop my miscarriage. It's a trade-off.
justsaynoemore2008-06-14 12:18:50And what you want to get is the special "four-sided" Pap smear, a regular Pap will not detect this. I may have been exposed to it. My mother died when i was 11 so i can't ask her but my aunt seems to recall her taking shots of somthing to prevent miscarriages while pregnant with me (1968(.
I asked my OB about any special tests/paps to test for exposure but she didn't know of anything other than the normal pap.
What is the 4 sided pap?????I am not exactly sure what the name of it is, but it deals with also taking a smear of the vagina. It supposedly is to take samples from "four sides" of the cervic and vagina. The lab has to be alerted about it too, because it's just a more comprehensive pap smear, more area tested, but if the lab isn't alerted, they study it as just a routine pap. So far four of us are DES daughters. RA affects 1% of the population, mostly women, and four of us with DES exposure end up on this site. Curious.
Whoa! No HRT? That's huge. I've been on it forever and the thought of giving it up scares me silly. I don't want to go back to feeling like I did before HRT. Hot flashes was child's play. It was the panic attacks and other symptoms that did me in. Rats! What a choice. But this is great information. I've printed out the CDC Annual Exam for DES Daughters sheet and will show it to my OB/GYN along with the note about alerting the lab of the 4 sided pap. This is a great thread and valuable information. Thanks to all of you. I would bet that there are many more here who were exposed and don't know it. It's not something that's highly communicated and unless you happened to come across something about it, you wouldn't think to check with your mom's. I know for myself, my mom saw an article about it in the early 80's and told me - otherwise I don't think I would have ever come across it.
I'm so pleased my message was answered. I've been a bit overwhelmed lately, so much medical stuff to tend to. My treatment for breast cancer was all done last year and so far so good.
But the DES 'down there' tests will be done each year for me, I'll make sure of that. I had only had eight weeks between breast self-examinations when I found the lump, and it was about the size of a pea. It doubled in size in one week. Don't want to frighten you, just want to get the word out that an annual mammogram probably wouldn't have caught it in time and self-examinations really are valuable.
A nice man came to my house today from the local government and put in some grab rails, raised the height of my couch and replaced the light bulb in my bedroom, for free. He gets 2 stars for being so supportive, it would be a very lonely journey without you.
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