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Visit to Mayo, PSN, and endometriosis Visit to Mayo, PSN, and endometriosis

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  #11  
Unread 10-14-2003, 01:03 PM
Visit to Mayo, PSN, and endometriosis

Dear Gidge,

How terrible about your surgery .... endo hides and masquerades for sure.

I had surgery at the Mayo Clinic in Rochester in 1991. The doctor I saw on Friday read the report to me and the surgeon at that time wrote that he saw abnormalities that he was not sure if they were endo or not.... so he excised a small piece during the operation and sent them to pathology... it came back as endo so he went and took care of all those areas.

I just mention this because this recent Mayo doctor wanted to see pathology reports on all my surgeries that confirmed endo... but I don't think my doctor ever has done a biopsy of the places he thinks are endo - he just lasers them all... which makes me think he may not always know what it looks like and may have missed some spots too. The only time I had the pathology done was during my 1991 surgery at Mayo. I think what my doctor does (no biopsies) is pretty common... at least where I live.

That is too bad your surgeon didn't even take a biopsy to find out.



Sarah
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  #12  
Unread 10-14-2003, 02:24 PM
Visit to Mayo, PSN, and endometriosis

yeah that was one of the more frustrating things, that they never did pathology on any of my adhesions.....who's to say they weren't endo? As a matter of fact they don't even remove them they just cut them and leave them in there.....to do what....join up again?

sounds like this doc is really good......we'll all be keeping our fingers crossed for ya!
  #13  
Unread 10-17-2003, 10:11 AM
Visit to Mayo, PSN, and endometriosis

Hi Sarah-Just read your reply to my post. What is an LSO? I know about the PCN but not of the LSO. You sound like you've done all the same things I have. I know I am a post-op newbie and have to give this time, but I kinda feel like what really are my next options you know? I cant bear the thought of any more surgeries, ever!!! I've had 5 laps, and an LAVH and the TAH-almost died during the last 2 surgeries!! You would think in this day and age something more could be done for us. When I went to the Cleveland Clinic last year they were talking about the implantable devices that release a continuous morphine drug. What are your thoughts on these? I dont think the surgery is as drastic as the PCN. Once you do the PCN there is no turning back right? What is the recovery and what about possible complications? I too thought for sure that my doc was going to find alot of endo last week, but what he did find didnt reproduce the intense pain I've been living with. I was awake and when he touched it , it hurt, but it wasnt "my pain". I've always had it hiding the cul de sac and it loves my SI ligaments too. There was a little back there this time, but not the horror that I was anticipating. I am pretty computer illiterate, but I have an awesome article you might want to read, I actually got it off of HS a long time ago under nerve entrap. heres the info:https://www.hystersisters.com/vb2/sho...ight=pain+map. If that doesnt come up the article was called: Peripheral Neuropathies presenting as Chronic Pelvic Pain by Paul Perry MD. It's about how important it is for our docs to first figure out if our pain is of central nervous origin or peripheral-this deterimines success of tx. and whether or not surgery will even help. It also go's onto to give info on how difficult it is to distinguish between the 2. I was suppose to go back to the CC for a diagnostic spinal block but never did. My neurologist said that the fact that I did respond to elavil pointed to pain of a central origin-He strongly disagreed with more surgery, and I'm starting to wonder if he was right all along . HTH-Youre in my prayers too, I was going to e-mail you directly but couldnt. Donna
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  #14  
Unread 10-17-2003, 11:30 AM
Visit to Mayo, PSN, and endometriosis

Hi Donna,

I sent you a test email. Hope it works. I don't know if the server move caused some trouble with emailing or not... we shall see.

Oh our stories do sound so similiar.... and I am not wanting anymore surgery either.

So the LSO just means Left Salpino-oopherectomy ... I don't know if I spelled it quite right... Basically removing my left "oopher"

The PSN is a presacral neurectomy from which there is no return. I have read and heard mixed information about what the side affects are, how bad, etc. Someone recently posted at HS that her PSN was great with no contrary problems - she thought it was the best thing she ever did and that it should be more available... but them some others haved seemed to have bowel problems afterwards. Maybe it just depends on the skill of the surgeon

I have seen a pelvic pain specialist since my hyst who thought that all my trouble was in the nervous system.... however, NOTHING he tried helped so I have to wonder about the diagnosis. THe Elavil did not help much except to relieve some of my bladder symptoms. The pain mgt doctor thought maybe it was in my nervous system too but the PSN nerve block only helped for a couple hours each time ... which he said indicates that there is still something physically causing the problem... Had it been in the nervous system the nerve block would have acted like "rebooting" your PC and reset everything so that the pain cycle is broken. I was really hoping it would work.

When I went to Mayo I think the doctors I saw thought it was musculoskeletal at first but then changed their minds after the physical exam. The doctor at Mayo did a very thorough test for nerve entrapment but none of my nerves seemed to be affected. I was under the impression though that somehow maybe the Obturator nerve was affected but then he said something about endometriosis there... so maybe he meant that I he thought maybe I had endo on the nerve (I have read that is possible especially when you have it in the cul de sac and pelvic wall).

I too am sensitive to meds and often have such extreme side affects that I cannot take enough of them for them to possibly work on the pain - or so the PM doctor said.

I still worry that it could be all in my nervous system or a musculoskeletal problem... and that more surgery will not help and could cause me other/more troubles... But the Mayo doctor seemed pretty convinced that it was not and he was able to find the exact areas repeatedly with the pelvic exam that sent me through the roof with pain... so I hope that is a good sign and it means the surgeon can find them too.

Keep in touch!! s

Sarah
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