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New to Group - not to post hyster life New to Group - not to post hyster life

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  #1  
Unread 01-26-2005, 03:28 PM
New to Group - not to post hyster life

Hello all! What a trip the last few years have been. When I was 25 I had my first surgery (cystectomy) which led to a partial removal of my right ovary. It went down hill from there! Within a year I had a total hysterectomy. I have had 6 surgeries - I have cysts continuing to grow even now. The adhesions keep coming back...and it seemed surgery was going to become a regular part of life. As of last week my doctor told me that we were not having surgery anymore. It was not in my best interest. So she referred me to a Pain Management doctor. I have mixed emotions about this. I guess I feel let down. I've always had complete trust in my doctor - but I almost feel abandoned. I know that doesn't sound logical. But I feel like there should be SOMETHING that can be done. I shouldn't have to learn how to "cope with the pain" now! I don't understand how we can do heart transplants - but I can't have a pain free day due to adhesions! Know what I mean??? I sure could use some words of encouragement!!!!

Thanks!
Cortney
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  #2  
Unread 01-26-2005, 03:44 PM
New to Group - not to post hyster life

Cortney,

I totally agree with you. I am a fellow recurrent adhesion sufferer. My doc also said no more surgery unless I have a bowel obstruction and I see the pain doc in about 4 weeks and have been on pain meds for about 3 months. I have heard of a doc in Germany and actually women that go there to have adhesion surgery because he is using a new barrier that hopefully will be available in the US soon. Have you used a barrier before.....I had seprafilm and it only lasted 4 weeks before the pain came back.
  #3  
Unread 01-27-2005, 06:46 AM
New to Group - not to post hyster life

No, I haven't had any sort of block. The surgeries basically just consisted of going in and removing the adhesions and scar tissue that was forming. The meeting with the Pain Management doctor went better than I expected. She put me on Topamax - which surprised me - as Topamax is an anti-seizure med. But she said that it also helps with chronic pelvic pain. And while I sure hope it does, I can't help but think that we are treating the symptoms, and not the finding a cure!
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  #4  
Unread 01-27-2005, 07:12 AM
New to Group - not to post hyster life

You are right and right now that is all I am praying for---that they CAN manage my symptoms cause right now, they are not being managed. How bad is your pain? Rate it 1-10..is it daily, intermittent, consistant, is it interfering with your daily life?
  #5  
Unread 01-27-2005, 10:35 AM
New to Group - not to post hyster life

Marian
I'm so sorry to hear that anyone has to go through what I have been going through - and from the looks of it - there are a lot of us out there!

Daily - my pain is about a 6. There are days that it shoots up to about an 8. But most days - it's consistant. Before my Hyster it was consistantly at an 8 - and I was physically ill. It was literally draining the life out of me. I will never regret the surgery - the relief was immediate! The aftermath - emotional/mental - is what I'm left to deal with now. Not to mention the surprises. I had a CT scan 6 months post op that I was told was normal. (I was having pain again.) It was just by chance that about 6 months after that I happened to read that CT report and it showed that I had a "Normal Left Ovary". Odd - since it had been removed almost a year before that!!! My ovaries were removed in pieces leading up to the hyster. So then we went in for "emergency surgery" to see what had grown there - or if the surgeon had "accidently" left something. But it was just a cyst...the beginning of what would be a number of them growing and rupturing. Nobody can tell me why/how they continue to grow. Something about they can grow from tiny ovarian cells that are remaining in my pelvic cavity from previous ruptured cysts. And then the adhesions started. A whole different kind of hell. They tug on my bladder and bowells. They pull on the sides of my pelvic cavity. But after 3 surgeries just to remove them, she said we can't do any more unless the bowell becomes compromised. lol - ok I'm done ranting!!! C
  #6  
Unread 01-27-2005, 07:28 PM
New to Group - not to post hyster life

Hi (((Cortney)))) and to Hyster Sisters. While I'm happy that you've joined us, I sure wish you'd found us for another reason, though

While I've been fortunate to not have to deal with the adhesion monster, I am not a stranger to chronic pain: for the past 2 1/2 years I've been dealing with bouts of arthritic pain flare-ups that can make it very hard to keep up with my normal, hectic lifestyle

As it's been the case for you, they can only treat my symptoms, and not get rid of the source of my pain. Like you, this has me wondering how this can be possible in this age of technology!!!

From what I know of adhesions, is that they are scar tissues that attach to other organs or to "walls". As they heal, they can cause the extreme pain that you are familiar with. The problem is that, unfortunately, having additional surgery to remove the scar tissue can often lead to even more adhesions... and even more pain That's why some doctors are now opting for alternatives to surgery when adhesions are concerned.

On the bright side, I've seen may of our members who have had success with Pain Management. Personally, I don't see it as giving up: often the Pain Management doctor is part of a team and they are looking at various solutions. Pain meds are only one of the tools they use to manage the pain.

Sending tons of hugs your way and hoping that you find relief very soon. Please keep us posted.
  #7  
Unread 01-28-2005, 10:12 AM
New to Group - not to post hyster life

  Quote:
Originally posted by cmharmon
And then the adhesions started. A whole different kind of hell. They tug on my bladder and bowells. They pull on the sides of my pelvic cavity. But after 3 surgeries just to remove them, she said we can't do any more unless the bowell becomes compromised. lol - ok I'm done ranting!!! C
I was told also that they would not do anymore surgery unless I had a bowel obstruction---which is not too far fetched in my case since the last time I had surgery, my bowels were twisted like a slinky causing narrowing of the colon passage---I believe it is like that this time too. I even had seprafilm placed this last time, but relief only lasted 4 weeks.
Wihtout the meds I am on now, my pain is debilitating...right now though my pain is increasing or should I say the tolerance to my pain meds is changed and they need to be adjusted. I go to a chronic pelvic pain specialist on Feb 25 and hope I get some relief then. My pain is also constant and a round a 6,7 with bad days getting up to a 9 and the best I have ever felt is about a 4...just the edge off. I can deal with having just the edge taken off, I think I am being too optomistic to think my pain would ever be completely gone, so I am satisfied with having the edge off.
Sounds like to me what you were describing at first was Ovarian Remnant Syndrome. Do a search on our site under resources for that and see if what other sisters describe is what you experienced.
I am also glad you are here, just wish it was under diff circumstances
You will find this place priceless...especially knowing you are not the only one dealing with this and being able to talk about it with someone who TOTALLY understands.
  #8  
Unread 01-28-2005, 10:30 AM
New to Group - not to post hyster life

I have adhesions . What the team who saw me said was rtue in a way .. surgery means more scarring . I suspect myu initial adhesions were caused by endo ..

a combination of pain from endo .. adhesions , adenomyosis and ovarian problems caused my life to get totally messed up

I yhope that something works out for you. I know what its like to live with pain

mei
  #9  
Unread 01-28-2005, 07:54 PM
New to Group - not to post hyster life

  Quote:
Originally posted by cow32323
I suspect my initial adhesions were caused by endo ..

My initial adhesions were caused by endo too.
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