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endomeresis in the pouch of douglas endomeresis in the pouch of douglas

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  #1  
Unread 10-04-2005, 06:11 AM
endomeresis in the pouch of douglas

Hi ladies, I have a question for anyone!!!
I had T.A.H. and both ovaries removed about 15 years ago. (supposedly for endometreosis!)
Since then, I have only ever been on estrogen.
Last year, in hospital, I had a cat-scan and it picked up SEVERE adhesions, and endo, STILL!!!
My last op for division of adhesions and bowel obstruction was around 8-9 years ago.
A gyno did not do this op, but a regular bowel surgeon. He picked up that I had pinky colour "spots" (as he called them) in the pouch of douglas. As far as I know, he didn't remove them as he told me that he did not know what they were.
I have done some research, and have heard that the pouch of douglas is one of the most painful places to get the endo cysts.
Has anyone else had any similar experiences? Any feedback would be soooo wonderful, as I am tearing my hair out with this pain, and have to take high doses of VERY STRONG pain killers every day.
I've been going through problems since the age of 17 (my first op due to cysts on the ovaries, and endo was diagnosed then.) No doc wants to do anymore ops, (I have had around 20 already), and the adhesions send me off to hospital at least once a year for bowel obstructions.
Can anyone shed some light on this for me please? I would be soooooo grateful.
Thank-you ladies,
Love RADICAL.
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  #2  
Unread 10-04-2005, 04:26 PM
endomeresis in the pouch of douglas

Hi Radical!

I'm so sorry you are still having pain - especially after 20 surgeries !!!

I haven't had any experience with your particular diagnosis - as my own endo has just reared it's ugly head recently. (Cause I needed another problem! lol)

I'm sure there is someone here on the road that can offer insight into your situation.

Please take care of yourself - and keep looking for the answers you need! Keep us posted!

s
Cortney
  #3  
Unread 10-04-2005, 06:01 PM
radical

Thank-you cmharmon for your concern, I don't know what I would do without you wonderful ladies here.
I am so grateful to have this support, this site really is a God send, and an answer to my ers.
I will keep searching for the right answers this time, as I have already made the mistake of not doing any research.....and I won't be doing that again!!!
This endo just keeps on going and going on, doesn't it? It is very frustrating, to say the least!
I'm sure someone will read this and have some answers, I have faith that God brought me here to this site for this reason, and maybe to help other women, (if I can.) And all you remarkable women are worth your weight in gold.
Radical.
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  #4  
Unread 10-04-2005, 11:34 PM
endomeresis in the pouch of douglas

(((radical)))

I am so sorry to hear that you are having so much trouble...I am an adhesion sufferer myself and take so much pain meds it would probably kill a "normal" person..and have been on and off since my hyst but consistently since last Sept.
I had my TAH for endo, however when they went in..adhesion city! With my subsequent adhesion surgeries they never found endo again. One time I thought for sure my endo had returned (it was really denial..lol) that I stopped using my Climara patch, but the pain didn't stop....hence surgery in Sept 04. I would get a copy of the surgical report and take it to your OB/GYN for a consult.
Sending more s your way!
  #5  
Unread 10-05-2005, 11:33 AM
radical

Hi marianwrn,
First of all, as a fellow endo/adhesions sufferer, I would like to send you LOTS OF
Thank-you for your post, I can TOTALLY sympathise with you too...
My dh and I have been doing alot of research on endo and adhesions and they seem to go hand in hand, One seems to feed off the other. The more surgeries (abdo) we have, the more adhesions we get...and if the surgeon misses one little bit (of endo) with our hysterectomies (or other abdo surgery), the cycle starts all over again. From what we've read, it seems to be a never ending cycle!
Another thing we found out was that, after our hysters, and removal of ovaries (I know you had yours removed too, as I read your history!!!), if our hormones are not balanced, this also "feeds" the endo.
Especially, (like in my case), I have only ever been on estrogen, the estrogen dominance is another "feeder" of endo/adhesions...
The only hope, it seems for women like us (and I bet there's thousands of us!) is to have total hormal balance. Hormones can help treat the endo pain, but the adhesions, I don't know how to get around that one! We can't keep having more ops, that's why I haven't had one for 8-9 years! I've just had to keep going to hospital for the adhesions obstructing the bowel....NOT NICE!
I feel like a walking chemist sometimes!!! The amount of pain meds I've had (and are still taking daily) would have killed about 50 people!!! (not to mention, all the other pills for this,and for that...!) (lol)
It's amazing that you suggested to get a copy of the surgical report, I just rang the hospital where my last op was done and asked for that very thing!!!(2 days ago). But to get ALL of them, would take me months!!! There's gotta be a book in there somewhere!!!!! (lol)
Thank-you again for your kind words of support, post me anytime, maybe we can lean on each other on our bad days....which are getting to be more frequent for me!
GOD BLESS, AND MANY S
Love Radical. xxx
  #6  
Unread 10-09-2005, 07:03 AM
endomeresis in the pouch of douglas

Radical:

It is widely held that adhesions and endometriosis can not be diagnosed via CT Scan. The only reliable way to diagnose these is via direct visualization, either laparoscopically or laparotomy. Could it be your doc found something in the scan and given your history assumes its adhesions and endo?

I see that you have been through a lot. Has anyone suggested stopping your estrogen to starve the endo? If they do, ask about weaning down slowly.

Now, this is just all an endo/adhesion sister's opinion. I'm not a doc. Make sure you have excellent physicians holding your hand thru this.

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