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Home from surgery & no adhesions... Nerve pain - help anyone? Home from surgery & no adhesions... Nerve pain - help anyone?

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  #1  
Unread 02-16-2006, 03:51 AM
Home from surgery & no adhesions... Nerve pain - help anyone?

Hi all - could really use some input about nerve-related chronic pelvic pain... and too.

I just got back about 12 hours ago from having the diagnostic lap I have been begging ANY doc to do for about 10 months. Nearly every doc I've been to has been convinced (and so have I) that I had adhesions and/or endo. The lap turned up NOTHING... I'm totally clean.

My GYN is turning me back to pain management (I've had no success with it thus far... just popping pills that don't cover the pain... I'm sure my liver is squeeling for me to stop, but what else can I do at the moment)...

I was almost hoping it was adhesions or endo... something tangible that could be removed. I hate to sound dramatic, and it sort of surprised me that I said it, but when my husband told me that my doc said there were no adhesions or endo to remove and that it was nerve related pain that would have to be addressed via pain management, I told my husband that I wanted to die. I guess I was just putting too much faith in the idea of getting better after the procedure. I thought I was going to heal up from the lap and be able to walk again without help... okay, more than that - I had these great plans for working, exercising, going places... the whole nine... just being normal, I guess.

What I wanted to ask about is: anyone out there with pelvic nerve pain - what are you doing to control it... what has worked for you as far as medications, alternative health, diet, exercise, medical procedures... ANYTHING at all...

I've heard a few people here mention a med called Lyrica, but I don't know anything about it... can anyone enlighten me?

In any case, thanks in advance for your time - for reading my rant - for your info, etc... And if you have any questions you think I may be able to answer for you, please fire away.

Warmest regards - Yr. HysterSister in crime

SlapMyGynie
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  #2  
Unread 02-16-2006, 01:27 PM
hi

Hi, I know this is a strange thing to say, but you will understand where I'm going from. I'm Sorry they didn't didn't anything! Weird thing to say, right? But I know what you are going through to a T, and going through more surgery (Lap) to get this answer must be tough. I don't know what to tell you about nerve pain. I am afraid that is what I have also, so I don;t want to have a lap done with fear of causing more problems. What did your surgeon tell you after he told you he found nothing? He must have some idea as to what to do with you know right? This is so frustrating, and I feel really bad for you.
  #3  
Unread 02-16-2006, 02:06 PM
Home from surgery & no adhesions... Nerve pain - help anyone?

Hi Slap –
My heart really goes out to you that the lap didn’t give you any answers and especially no relief from the pain. The lap I had about a year after the hysterectomy to get rid of adhesions, turned out to be a major surgery, complete with a hole in my colon. They did clean up some adhesions, but the pain has never gone away. About a year ago, I told my husband that it seemed the only thing I had to look forward to was my own death, so I completely understand how you are feeling. I’m guessing you don’t really want to die, but living in pain all the time really changes you, and it’s tough to come to terms with. (not that I’m there, yet).

Lyrica is one of the medications I’ve tried. It only helped me a little and gave me pretty bad blurred vision, so I stopped it. It also made me eat like nothing I have ever experienced! I just never got full. I have read here, tho that quite a few have tried it and had success, so my fingers are crossed that it’s an answer for you.

I wish I had some words of wisdom for you, but I don’t. I think it’s especially hard when family can’t really understand the futility you feel sometimes, even tho they sympathize. Luckily, at least for me, the feelings of futility are not usually there and somehow I just keep getting on with it.

I hope you are feeling better soon and that pain management can help. My doctor has helped me a lot and usually has something different to try – even tho nothing has really worked yet. Don’t lose hope. I’ve read a lot of your posts and you always struck me as someone I’d like to know in “real-life”. PM me if you want to chat.
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  #4  
Unread 02-16-2006, 04:01 PM
Home from surgery & no adhesions... Nerve pain - help anyone?


I can really relate to how you're feeling. The same thing happened to me several years ago. After doing the doctor go round, some saying it was adhesions, some not, I finally found a keeper, who was willing to try and help. We tried various things first, and than he finally relented to my and another doc's pestering to do a lap. I was absolutely devastated when I woke up from surgery and dh told me the news that the doc had found absolutely nothing. I cried for a week!

It was shortly after that that I started accupuncture treatments. I figured I had nothing to lose and everything to gain. I had tried just about everything else. Accupuncture has been a lifesaver for me. The accupuncture has taken care of the pelvic pain, but not my abdominal issues. Interesting to note also that the incision I had from my incision revision several years before has totally disappeared.

Before I had the exploratory lap I had surgery to remove the damaged nerves. I had relief for a little while, but after some time the pain started to come back. As my doc explained it, you can't actually removed the nerve, only the damaged section and after some time the nerve can start to regenerate. There were times I felt like someone was zapping me with an electrical prod.

I currently still use the duragesic patch and darvocet for breakthru pain. I have been able to decrease my darvocet usage since starting the accupuncture treatments.

Before all this, I had tried Neurontin and Gabatril for the nerve damage. The Neurontin didn't do much for me, but I think I was impatient and didn't give it enough time. The Gabatril helped some.

  #5  
Unread 02-16-2006, 05:15 PM
Home from surgery & no adhesions... Nerve pain - help anyone?

Hello,

I am sorry to her your surgery did not help...I can relate - I had another surgery 6 weeks ago and it did not help me.

I had a LAVH in 2002. I kept both ovaries at that time. In 2004 I had my right ovary removed due to a complex cyst and adhesions. I still have the left ovary. In February 2005 I had laparoscopic surgery to remove a tumor -this tumor had grown into the femoral nerve. Six weeks ago I had another surgery because I was again having pelvic pain - a few adhesions were removed and some fluid buildup draind from my pelvic wall. My doctor said he has gone as deep as he can go and removed as many adhesions as possible. He does not want to cause any further damage to the nerve structure.

I am still having considerable pelvic pain. The most recent surgery did not hep. My doctor said he has done as much as he can do and referred me to a neurologist. I saw the neurologist who said my femoral nerve suffered some trauma when I had the tumor removed last February. He said that the tumor had grown into the nerve and while removing the tumor some damage was done.

I was given a cortisione/lidocaine injection in the nerve - to hopefully settle the nerve down so it can heal. He also started me on Lyrica. I have only been on the Lyrica for a week - I was told it could take a week or so to know it it would help or not. Prior to this recent surgery I had tried Neorontin for about 6 weeks - it caused problems with my vision and concentration - it did not help. I still take Darvocet during the day and Vicodin or Percocet at night. I see the neurologist in about a week - I am going to ask about a pain patch.

I too was told that the nerve could regenerate and heal itself; however, it may take some considerable time. Severing the nerve could cause total numbness and difficulty walking - not a good option.

I am also continuing to see my chriopractor - he is using electrical stimulation, ultrasound, and cold laser to help the nerve regenerate.

My heating pad and I have become great companions when I get home from work. I have been using some 8 hour heat pads while at work.

Unfortutately nerve damage can be quite painful and the recovery (if it happens) can be long.

I am sending some extra s your way.
  #6  
Unread 02-16-2006, 06:45 PM
Home from surgery & no adhesions... Nerve pain - help anyone?

I'm sorry you didn't get the results you were expecting. I have been suffering with pain from the ilioinguinal nerve. Before I got a definitive diagnosis I saw a chiropractor and had physical therapy. My Gyn sent me to a neurologist who diagnosed the pain as ilioinguinal neuralgia and referred me to a pain management center. I have had a nerve block that unfortunately was not successful. I was put on Trileptal which has helped to dull the pain but causes me to have extreme dizziness and fatigue and makes me feel like a walking drunk without the giddiness. I am scheduled for an epidural nerve block in 1 1/2 weeks. My Gyn has been doing some research and recently contacted a Dr from Cornell University who has had experience performing neurectomies (removal of the nerve) regarding my case. I'm not too keen on doing this and I'd like to wait to see if the next nerve block will have a positive effect first.
I know how frustrated you are. I guess we all expected our lives to be improved after our hysterectomy and some of us haven't had the textbook recovery. The important thing is to keep searching for answers and to try keep a positive attitude, maybe we can will ourselves well again.
Michelle
  #7  
Unread 02-16-2006, 10:10 PM
Home from surgery & no adhesions... Nerve pain - help anyone?

I have been experiencing abdominal pain every since my TAH in May 2004. only a few drs ever tried to figure out what was going on,My gyn sent me for a cat scan, which showed nothing. I went to a post abdominal surgery dr. he did a lapro looking for the cause. We expected adhesions, but there was none.He did take out my sick GB,I had my rectocele and enterocele surgery and I was left with ongoimg vaginal pain.My gyn believes it is scar tissue irritating the nerves.8 months later I had a tvt and a cystocele surgery, which has caused me more aggrivation.my back went out after my bladder surgery. I had a mri which showed spinal stenosis and other things, I had a 2 level fusion. I had bilateral nerve inpingement. That got pretty much better.I am 3 1/2 months post op now and am going to see if my neuro surgeon will do a nerve block. I need relief from the pain. I am on 2700mg.neurontin, duragesic pain patch and it really isnot helping.
I do know there has to be somekind of treatment for people like us. I hope to be able to go back to work.
Peggy
  #8  
Unread 02-17-2006, 01:14 AM
Home from surgery & no adhesions... Nerve pain - help anyone?

((whatsnormal)) Totally not a weird thing to say... that is exactly how I felt. I was really hoping it was something that could be addressed then and there, you know? Couple weeks of recovery and reduced pain, then I'd be skipping through the tall grass like a goofy gal in a commercial, blah blah blah. Pathetic, isn't it?
I didn't get to talk to my doc after the surgery... my DH did... but I have an appt. in 2 weeks w/him. He's going to send me back to pain mngmt. Guess we'll see where that lands me... I LOATHE my PM doc. My GYN is supposed to talk to him about a treatment plan, so hopefully the PM doc won't obsess about "fixing" my BACK (which doesn't need his help).
I totally feel for you - being afraid to find out and all - but you should consider taking the chance... you might get the relief you need. Thank you for being so sweet... I'll be thinking of you!

((Mellie)) Thank you for sharing that with me... I hate that you had to have those feelings - but you give me hope... you rose above it and perservered. I know that I can too!
You are an awesome lady, Mellie... thanks for the "real life" comment... that was a great boost! I'd love to keep in contact - drop me a line anytime!

((Kim M)) That's exactly how it went for me... I just came out of the recovery room & my DH told me... I just started bawling. I was so confused. I almost felt like my body had been lying to me for the majority of a year, you know?
I definitely want to ask my PM doc to start me on accupuncture, as his office offers it.
Could you tell me more about the duragesic patch and Gabatril?
Thanks so much... as always, you are an absolute doll, Kim - I can't tell you how much I appreciate you!

((LynnMary)) Goodness, love... you have been through the nerve damage wringer. I really feel for you.
It seems like a lot of the meds for nerve pain carry some heavy vision/motor function side-effects! Lovely. Can we all just opt off of this carnival ride? Ugh.
LOL on the warm electric companion... I have one for my back and one for my abdomen, packages of self-heating 8hr. stickies, and a handmade one that is stuffed with lavender that you toss in the microwave for 3 min. I think I'm a certifiable heating pad junkie
I really thank you for all of the information and help you've given me... and I'll keep you in my thoughts. I hope you're healing will progress at an ASTOUNDING rate! Keep me posted!

((candyapplelady)) "I guess we all expected our lives to be improved after our hysterectomy and some of us haven't had the textbook recovery. The important thing is to keep searching for answers and to try keep a positive attitude, maybe we can will ourselves well again." That is the just about the best block of text I've wrapped my mind around in quite a while... well said.

I wish you the absolute best on your path to wellness (sounds corny, but the sentiment is most sincere)... Good luck with the nerve block - please keep us posted! AND, please DO wait to see how the block goes first.

((mtdewpeg)) I've read several of your posts (and dropped a line on a few), and you have been through a lot... You are so strong. When I read about women like you on this board, I'm inspired to be strong and not give up.
You are absolutely right... there HAS to be treatment for us... ALL of us. It is easy to lose sight of that goal sometimes - pain is tricky - but all we need to do to get that inspiration back is come here and talk to our sisters.

With much love and many blessings to all of you -
Your HysterSister in crime,
xoxox -
SlapMyGynie
  #9  
Unread 02-17-2006, 09:19 AM
Home from surgery & no adhesions... Nerve pain - help anyone?

I just wanted to add that I also know what you're going through. I'm on the duragesic pain patch, which is working very well for me, and lorcet/vicodin for breakthrough pain. I'm looking into sacroilliac joint injections next appt with my PM doc, because my pain seems to be localized around that nerve and down my legs. I have had 2 nerve blocks and 3 epidurals. The epi's helped but only temporarily. But it's different for everyone. I hope you get some answers...just wanted to know I know what you're going thru. You might want to check into the Duragesic. It's great in many ways, and one is that it doesn't wreak havoc on your liver. Please PM me if you have any more specific questions and I'll be glad to help you!
Take care,
Christina
  #10  
Unread 02-26-2006, 06:54 AM
Home from surgery & no adhesions... Nerve pain - help anyone?

Hi all... healing up, but feeling like dog poo on the pain rating scale... Tomorrow I've got an appt. with my GYN for post-op follow up, then right after that, down the highway for an appt. with my pain management doc... I'm going to ask him about prescribing accupuncture and the Duragesic patch... hopefully, he'll consider it - if not, I think I'm done w/him... we'll see how it goes, I guess.

Wish me luck? Throw me some s if you've got 'em to spare!
xoxox,
SlapMyGynie
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