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1 yr. later-bladder nerve damage? 1 yr. later-bladder nerve damage?

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  #1  
Unread 07-14-2006, 01:58 PM
1 yr. later-bladder nerve damage?

I had a total vaginal hysterectomy, bladder repair and rectal repair a year ago this past Tuesday. Everything is fine except this bladder stuff -the first few months, I peed every 30 minutes with a slow stream but that cleared up. Last January, my gyno sent me to urologist. He has been perplexed - I have pressure, pain and heaviness in the bladder area but the constant urination cleared up. He finally did a cystoscopy under general anesthesia. Most of my bladder lining looked fine, but one place showed some inflammation and the biopsy showed chronic inflammation. The uro said it was "the beginnings of interstistial cystitis" and put me on Elmiron (a drug for this condition that can take months to work, if it does at all). He also sent me to pelvic floor therapy for awhile, but that didn't help. The uro now thinks I don't have IC because I don't exhibit the "typical" urinary frequency that many sufferers have. He thinks instead that it's nerve damage, so he sent me to a pain doctor. The pain DR has put me on Lyrica (for nerve pain) and Cymbalta (an anti-depressant). He's also discussed the possibibility of implanting a little stimulator in the spinal cord. The medicines don't seem to be making that much difference - it's hard to tell totally because the intensity of my symptoms vary.

Has anyone else been diagnosed with nerve damage after surgery. Some people on the Interstistial Cystitis Network message board think I may have IC even though uro no longer thinks so. Has anyone else had this experience? I'd like to hear from you. I had bad prolapse before surgery and I was hoping surgery would help my problems, not create more!

Betty
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  #2  
Unread 07-14-2006, 02:06 PM
1 yr. later-bladder nerve damage?

I have similar symptoms. I had the frequent urination and up many times at night. Now I no longer have to get up at night and don't have the urge too frequently. My uro thinks that I need the frequency to have IC, but I have the other symptoms of pain and pressure. I am on Elavil, which is an old antidepressant that works on nerve pain and bladder pain. It's wonderful. I only have to take 25 mg at night and I feel pretty good. If I'm not too careful about my diet I will hurt a little, so I watch the caffeine and acidic foods. I did have the bladder symptoms before my surgery, but the surgery increased them.

Hope you find some answers and feel better soon.
  #3  
Unread 07-14-2006, 02:38 PM
1 yr. later-bladder nerve damage?

Thanks BeachLady. Last fall, my gyno put me on the generic of Elavil which is amitryptyline (sp?) but I couldn't take it because it gave me really bizarre dreams. I don't know if the brand name version of Elavil that you've mentioned would work any better - it might be worth asking about. This Lyrica for nerve pain ironically seems to help my shoulder and leg pain, but not the bladder!

I'm glad to know I'm not alone! My doctors assure me that my bladder is no longer prolapsed but it sure feels like it!

Betty
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  #4  
Unread 07-14-2006, 08:28 PM
1 yr. later-bladder nerve damage?

Hi Betty,
I had my surgery a year ago too and my doctor thinks I have nerve damage too, although I still have a prolapse and my main symptom is frequency. I wrote a note to the doctor on Pelvicfloor.com and he answered about the interstim implant and he said it's the 'gold standard' but I don't remember him saying it's for pain. He also mentioned that a new treatment is out that is less invasive, it involves 12, 30 minute treatments with a temporary lead put into your heal and to the same nerve running to your bladder and that somehow can make a difference. I'm still in the seeing if putting my bladder back will help phase, but if it doesn't work I'm going to try for the heal thing before implanting anything in my spine and butt. Good Luck to you it has been a long year!
  #5  
Unread 07-14-2006, 08:52 PM
1 yr. later-bladder nerve damage?

Betty, I forgot that you were the one with wierd dreams. I am on the generic form also, just too lazy to spell it out. I had terrible dreams at first too, but they did go away after a while. Every once in a while I'll have one of those very disturbing ones, but it's very rare.

Bowlinggirl, that heal thing sounds worth a try. I've never heard of it. I'd rather try that first also instead of getting the wires implanted permanently.
  #6  
Unread 07-15-2006, 06:47 AM
1 yr. later-bladder nerve damage?

Wow - I appreciate this thread.

I just had my TAH/BSO/TVT with other bladder and colon repairs on Tuesday. I have been having a few problems with urinating (not knowing when I'm full - not knowing if I voided completely - still going frequently, etc.)

I have nerve pain from past surgeries - and now a new nerve pain after my surgery on Tuesday. It seems that my right thigh/leg feels numb and is worse when I "bear down" to have a BM or try to void my bladder completely.

I've had EMGs and am also seeing a pain doctor to help me deal with my nerve pain.

I have been on several meds for my nerve pain. I've tried Elavil (amytriptaline) but it interfered with my sleep patterns with weird dreams. I tried Cymbalta - but that made me feel apathetic and didn't help much with the pain. I've tried Neurontin - but had no relief. I am also trying Effexor - but I don't think it's helping and will ask the doctor if I can go off of it after I heal from surgery.

What has worked? I have had nerve blocks. Lyrica has worked the best for my other nerve pain (dulls it - but doesn't get rid of the pain) - but I haven't started taking it since my surgery - yet it's ok for me to take it. I also have Lydocain patches.

I plan on asking my doctor about my new nerve pain at my post-op appointment. Hopefully my swelling will go down and I will know more about how I am doing at that time.

I hope we all find relief!
  #7  
Unread 07-17-2006, 09:20 AM
1 yr. later-bladder nerve damage?

I'm not sure what works - I'm currently on Cymbalta too and don't like it - it gives me dry mouth like some other medicines do. I'm going to go off of it because dry mouth has set up some dental problems for me. All I know is that I am disappointed in my surgery results. I expected to feel better than this by now!

Betty
  #8  
Unread 07-18-2006, 03:41 PM
Re: Nerve damage

Hi ladies,
It's been awhile since I last posted but just wanted to make a comment or two...
I have a neurogenic bladder (ie: dead..no longer contracts) do to nerve damage during a TVH/bladder sling surgery, and have been self cathing for 7+ years..
Have any of you had any urodynamic studies to confirm any nerve damage?
The interstim implant is like a "pace maker" for the bladder, which I am guessing if you had a diagnosis of IC it would "pace" the bladder contractions or slow them down or something like that.
If your bladder has NO contractions (like mine) theres only a 50-50 chance of the interstim working, there has to be some function left in the bladder for it to work. Which isnt worth the risk for me.
I would highly recomend any and all other options before I jumped on the interstim wagon sorta speek.
I havent heard of that new less invasive procedure , but I would certiantly try that option first, and be sure to have all nessesary testing to find out exactly what is causing your symptoms before trying any other surgery.
If your not getting the help you need or feel your not being listened to or heard, go "Doc"shopping until your satisfied! Your all worth the best medical care, and don't forget that!
I wish you all the best ladies,
Netty
  #9  
Unread 07-19-2006, 08:32 AM
1 yr. later-bladder nerve damage?

Thanks for the post about interstim. I'm seeing my pain doctor this afternoon and will discuss my options. I have not had urodynamic studies done to confirm nerve damage. My uro first said I had IC, now he's saying nerve damage. I'd certainly like to know which one it really is before I proceed with anything else!

Betty
  #10  
Unread 07-19-2006, 10:09 AM
1 yr. later-bladder nerve damage?

Betty,
I think thats a very good Idea..It sure beats "the process of ilimination" for sure! We all have to be our own advocates!
Wish you the best, and let me know what your Pain Doc has to say today.
Take care,
Netty
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