DES Daughters with CC / LC / MC

[cayocosta]

Hello Everyone,

I was diagnosed (via colonoscopy) with CC 5 years ago - at age 42. This past year I was diagnosed as being hypothyroid (Hashimoto's thyroiditis). Neither condition runs in my family.

According to the CDC, research is being done into a DES (Diethylstilbestrol) link to auto-immune diseases such as these. DES was a synthetic estrogen given to pregnant women to prevent miscarriage between 1938-1971. It's main use was in the 50's and early 60's. It was pulled from the market due to the tragic reproductive problems it caused children - especially daughters - of the women who were given it.

After 20+ years of female issues related to the DES, now I am developing all these auto-immune disorders! At 3:00 this morning it hit me - WHAT if these auto-immune disorders were related to the DES? Jumping on the computer this morning I discovered the potential link between the 2! Our biggest problem is that a diagnosis of MC is relatively new, and the DES daughters are just approaching menopause so no one is sure what is linked to what. BTW: I am in menopause at the age of 47, and DES can cause menopause at a younger age than "normal".

My labs are also wierd and unexplainable right now. I just started going to the Cleveland Clinic to a doctor in Hematology/Oncology who has ruled out bone marrow cancer or leukemia. My WBC has run high for at least 10 years, along with my Neutrophils and Monocytes. My Lymphs are low, and my Leukocyte Alkaline Phos Score is high. Allergy testing and meds last year showed it is not allergies that are making the WBC's high (FYI: I don't have a problem with gluten - only barley). The Cleveland Clinic doctor said that at this point maybe my labs are "my normal". At any rate, I didn't think to tell her that I am a DES daughter but I will be doing that ASAP.

At least I am also seeing a new GI doc at the Cleveland Clinic that has TEN patients with CC!!!!!! Considering my diagnosing doc 5 years ago was at a complete loss on what to do with me, this is welcomed news. I also need to ask him about a possible DES link.

If ANY of you are also DES Daughters who also have CC/LC, I would love to hear from you.

[tex]

Hi,

This is a very interesting topic, so I am moving it to the Main Message Board, and making it "sticky", so that more members will see it. After a couple of weeks or so, I'll move it back to the "Polls" forum.

Welcome to the board. I hope you get a good response to your poll, and I hope most members are better informed about this subject than I am, because I don't have the foggiest idea if my mother was ever given DES or not.

Tex

[mle_ii]

Here's some more info for those who want to l earn more:
http://en.wikipedia.org/wiki/Diethylstilbestrol

My guess would be that screwing with the hormones of the body could potentially cause colitis of any tissue. The birth defects associated aren't a help either.

Mike

[cayocosta]

Thanks, Tex, and it is nice to meet you. Many, many people did not know if their mothers were taking the drug. And there are millions of us who were exposed. Fortunately for you, the majority of problems affect the female offspring. My brother, who was also exposed, only suffered from nearsightedness (another tie-in) and has been finally able to conceive - at the age of 45!

I am glad to have found a place with a group of folks that intimately know what suffering from CC is all about. I was so sick when diagnosed and was basically drinking a case of Gatorade a day just to stay alive. My un-knowledgable doc put me straight an Asacol which caused too many problems. He then told me I'd have to be on steroids the rest of my life which is when I turned my back and headed out the door.

At the same time, I was seeing a neurosurgeon for a ruptured disk.... his PA actually listened to me and suggested I try Elavil/amaptryptaline which worked for her IBS (not the same - but hey - worth the try). It worked beautifully and I've been in remission since. BUT - and this is a big but - it went the other way after a bit (no more D - only C!) and my PCP missed my thyroid disease for the last who-knows-how-many years. Can you believe they told someone with CC that I needed to eat more fiber?! Duh. My gynecologist actually diagnosed my thyroid disease in July 2007 with an off-the-scale TSH of 17. I am now petrified that the CC will come back now since the thyroid mess is finally getting straightened out. I will only trust the Cleveland Clinic from here on out.

Had my 5-year colonoscopy this past Friday. Also had an endoscopy. Waiting on the biopsies.

I'm sure all of you are as frustrated as I am that it seems everyone in the medical establisment just "ignores" this horrible disease because we are so rare. My DXing doc 5 years ago actually told me to "not worry - it doesn't lead to cancer like Crohn's may". Guess what? They don't KNOW as we are all too young and too small of a population so far. Well - if a link to DES is established it sure will get some attention! Long shot, but there are too many coincidences here.

[cayocosta]

Hi Mike,
I reviewed the Wikipedia article you posted and was stunned to see that DES Sons are at risk for autoimmune disorders also. Yikes!
Laura

[barbaranoela]

Hi Laura----I found your article very interesting----

When I was pregnant with my oldest daughter--I started to have issues(as I had miscarried my first) soooooooo my GYN---suggested that I have a shot once a month for 3 months---precautionary something or another to prevent another miscarriage--
I had no idea---I never asked--who KNEW in those dayz----all U wanted was NOT to lose the baby~~~~
Well upon my daughters first GYN Xam --she called me hysterical-informing me that she is DES~~~~~
Needless to say I argued the point ---but due to my ignorance @ that time she is--DES~~~~~

She has had vaginal cancer scares but her Oncologist GYN--treated her for many months---and she is still under a GYN Oncologist--but does not suffer with any CC/LC---She has informed her GYN of my issues--

I did go thru menopause @ age 48----and this past year was detected with nodes in my thyroid---hyPER---so am now on meds--

And am MCC----but thankfully I have been OK---since being aggressively treated ---
Nice meeting U-----
Barbara

[tex]

Laura,

We seem to be a rather radical group. I left, and never went back, after my GI doc suggested surgical removal of the lower half of my colon, "because sometimes that helps". LOL.

It will be interesting to see what the biopsies show. I hope you'll share that information with us.

The comment that your diagnosing doctor made about "not worrying", reminds me of what one of our other members was told by her doctor. At the time, she was practically living in the bathroom, and he told her, "It's nothing to worry about, it's just a little diarrhea." Hahahahaha. Can you imagine that? Those who don't have this disease can never truly understand it. When they tell you, "I know how you feel." - you know they're lying.

You're correct, of course - MC was first described only slightly over 20 years ago. Progress in the medical profession is usually measured in terms of decades, rather than years, so this disease is too new to have earned any respect in medical circles.

Something is definitely causing a rapid rise in the number of cases of MC, and the average age of patients diagnosed with the condition, is steadily going down. Lately, we've seen teenagers, and even five or six year olds, diagnosed with the disease. If DES is a factor, then the third generation effect, or even a transgenerational effect will surely need to be considered.

Tex

[harvest_table]

Laura,

I called my mother this evening and asked her about this. She was not given this drug.

Mrs. Columbo, whow....are you saying you were given this medication when you were pregnant?

Love, and happy new year from Fergus,

Joanna

[barbaranoela]

Hi Joanna--and Happy New Year to all in Fergus--

Yes, I was given this med.---as I posted---one shot given in a 3 month period--and as I said---I was not tuned into the DES syndrom---
So to prevent any miscarring I took it--
I had checked back ,when my daughter informed me, but the GYN had retired and all his old records were gone---

Needless to say----I so---when I realized what I DIDNT check into-

But I dont believe that she is into child bearing ---after all she hasnt met MR. PERFECT and I think she is a total career woman--
Happy New Year-
luve Mrs. Columbo

[kate_ce1995]

until the (much more expensive) GnRH agonist leuprolide was found to have efficacy similar to DES with fewer side effects

Man, men must have like no side effects with Lupron! Sorry, totally off topic but if this DES thing had more side effects than Lupron in treating prostate cancer! Nerve hit as a 6 month taker of Lupron...I really don't think my memory or concentration has ever fully returned after that (a similar complaint of many Lupron patients).

I was born in 1972 and have never heard my mother talk about it. Although I sure have my share of autoimmune things crop up (endometriosis, MC).

Katy

[cayocosta]

Hi Barbara - Happy New Year!
Never, ever, ever, ever feel any guilt or remorse regarding the DES exposure. My mother does and she absolutely should not - but nothing I do or say helps. The doctors are also not to blame - they were told by the drug companies that it was harmless and would help not only prevent miscarriage but also make the babies "bigger and stronger". It was even pushed a being "like a vitamin"! Given what I've read about what occurred back then - anyone would have been made to feel like a BAD mother who wasn't protecting her unborn child if she didn't take it.

It turns out some patients at the University of Chicago were actually given the drug without the mother's knowledge in another of our country's bizarre medical experiments!

Unfortunately, many doctors (including my mother's) destroyed medical records when the furor started in the 1970's. They were scared they would be sued - the courts have ruled since then that they can't be (only the drug cos). I DO blame my mother's doc for being a weasel and destroying the records - and the fact that when he realized I was a classic DES Daughter he bullied my mother and lied to us. My mother just told me he even tape-recorded the exam where he told me a needed a hysterectomy at age 23.... she has always felt he was trying to CYA. BTW: I did not get a hysterectomy back then. Was able to go to University of Michigan teaching hospital for alternative treatment.

I haven't paid much attention to the DES thing since 4 years ago when I had my hysterectomy. While doing research on the CC and the thyroid problem is when all of this resurfaced. Now I'm finding out that DES Daughters over 40 are 250% more likely to get breast canter, and the DES Mothers are at increased risk. AAARGGGHHH!!! Will it never end?

If she hasn't already, please encourage your daughter to visit the DES Action website for support at:
http://www.desaction.org/

And the CDC DES Update site at:
http://www.cdc.gov/des/hcp/information/ ... html#steps

I hope everything turns out OK for both of you!
Laura

[cayocosta]

For anyone who doesn't know whether your mother took DES, here is a link to the CDC self-assessment guide:

http://www.cdc.gov/des/consumers/guide/

[Becky]

Wow, this sent shivers up my spine.
My mom passed away in 1992. First she had breast cancer and then ovarian. I can't ask her the question but I already e-mailed the hospital to try to find information. My brother was born in 1960. I was born in 1966. Between the two of us, she had 2 preemie still births and 2 miscarriages. I'm almost positive I'm a DES daughter. I have MC, have an irregular shaped cervix - uterus. I had one miscarriage that I know of of but I think I had 1 or 2 more very early. Thankfully, I have 2 wonderful daughters, although reading about 3rd generation DES causes me concern. I knew nothing about it until reading your post. Thank you very much!

[MaggieRedwings]

Hi Laura,

Sorry I missed this when I was on early this morning. My mother did take DES and in turn I decided not to have children due to the 3rd generation DES problems., my sister miscarried 4 times and had many problems but never MC or CC.

I have CC, have had a hysterectomy and therefore menopause early.

At this point in time, I am dealing with a number of isses and would not be the least surprised at anything that surfaced regarding DES. In the past I kept close contact with a local DES chapter, but have now lost contact.

Any information you come up with please feel free to pass on.

Maggie

[Peggy]

I had to call my Mom to check, and then was able to answer no.

Peggy