After a cystitis infection 3 months ago, antibiotics cleared this, water tests now negative, I have never been without the burning pain in my bladder and urethra. When I urinate the urethra feels very sore and sometimes burns, but seconds after I finish waves of pain go up into my bladder. I have had an ultra sound and cystoscopy, both showing the bgladder and kidneys ok, so the urologist consultant said I do not have IC , but believes it to be the nerves causing the same pain as severe cystitis. I have tried antidepressents and am on gabapentin, but the pain breaks through and when the effect of the tablets wears off the pain is severe. It is worse when sat of jerking in the car. Standing is usually the best thing. I do not understand the nerve problem or what there is that can be done about this, if this is what it is. I drink plenty of water and follow a diet of no coffee, alcohol, citurs fruits, but nothing works. It is simply hard to cope with
Nerve pain is extreamly painful, I myself have experienced this with other surgeries, so I do feel for you! What the nerve pain is is the nerves become "hyper sencitive" which causes that "burning fire" feeling.
But something else that feels simular to nerve pain is urethra and bladder spasms. A spasm will cause a "burning" feeling also. I have a "neurogenic" bladder (basicly my bladder is dead) so I have no pain in the bladder, but do suffer from urethra spasms when my bladder gets too full. I "self cath" to pee. Anyway, having this spasm(which burns like crazy, enough to make my eyes water and my nose run!)is the only way I know its time to self cath.
If the gabapentin isnt working for you, it may be "spasms" your having, not nerve pain. Maybe you could talk to your Doctor about trying a "antispasmotic" to see if this relieves your pain? Might be worth a try. Just a thought.
I wish you the best,
Take care, and God bless,
Thanks Annette. I have tried all sorts of tablets. My bladder burns constantly and worsens when I finish urinating as the burning pain goes up the urethra and into the bladder. I don't visit the loo too often, so don't have frequency problems. I actually don't know much about nerves sending signals to the brain to say something is hurting, so I don't know if this is wrong messages or actual nerve damage. My painkiller has got on top of it at the moment, so can cope, b ut as they die down it really gets worse as it breaks through. I am also confused with the term urethra syndrome, do you have knowledge of this? I am sorry you have problems too. Mary12
I just did a quick search of Urethral syndrome. Basicly it said the pain is simular to a UTI(urinary tract infection) with the burning pain, but there is no infection detected. It said treatment however is with antibiotics and it seems to respond to it. Have they tried you on antibiotics dispite no infection? Might be worth a try. I had never heard of this particular syndrome until you mentioned it.
I have been dealing with my issues for 10 years, so at this point its second nature to me, but intionaly it was pretty tramatic.
I sure hope you find some answers soon!
Take care and GOd bless,
Annette, Yes I have looked it up too. I think syndrome is a name they use when they don't know what it is! I have tried suggesting things to the doctor, but they just want to pursue the 'sensitive nerve' idea first. Yes, I was on four lots of antibiotics after new year, until my infection went and tests have been clear since, but although the infection cleared the pains stayed exactly the same, this is why they think it has caused the nerve issue. It is unlike, say, a trapped nerve in the back, which I once had, and the sensation from the urethra spreads all over the body, which is very hard to explain to a doctor. So, I don't know the system in America, but I will eventually be referred to a pain clinic for nerve blockers, whatever they are. How are you coping with your family? Luckily my two daughters are grown up and live away, but it must be hard for anyone with children to look after and a full time job to go to. Thank you very much for replying, it helps to talk to someone. Mary
Yes things have been tough the few years for me health wise, and I'm a single Mom. I was working full time 10-12 hours a day up until June of last year, since then I've been on disability through work. I've had to sell my home since then. So yes its been a struggle, and living with parents at 43 isnt where I thought I'd be at this age! I have another health issue that is going to be adressed in a couple weeks. My heart had stopped twice while I was in the hospital the day after lung surgery, so now need to be evaluated to see if I need a pace maker. So we will see after these next tests what they determine. I just want to be back on my feet again.
I know I will never be able to return to the job I had because it was VERY physical. But I hope to be able to do something. My employer has required me to file for social security, and wont know for a few months wether I qualify for that. BUT my ultimate hope is to be able to work someday again. I'm not ready to surrender to these health issues. SO we will see.
My boys are young, 10 and 15 so I have many years left to be the sole supporter. Having faith in God gets me through, and the hard road to recovery, has made me stronger. I know I can make it through all this.
Your bladder issues do sound like a "nerve" thing going on. Does it feel like a "electrical shock" of sorts going through your body?
I had alot of nerve pain recovering
after lung surgery, and it would be a wave of burning pain accross my chest. I was put on gabapentin also, but I had alot of side effects with that med. The dizziness and nausea were too much to handle, I did take it for a week, which when I stopped it subsided the pain enough to make it more tollerable. Im again starting to have some more nerve pain again across my chest, because when they did surgery they went through my back, and all the nerves had been cut. So now they are "regenerating" and "fireing" again. At this point Ive been able to tollerate it, and hope to continue to be able to.
I sure hope they can get a handle on the pain your suffering with, it sure can make things misserable. Keep pushing for the answers though, I believe they are out there.
Hello Annette. Just a quick note to ask how you are doing. I am up and down, mostly as the day progresses, and have had to cancel a second holiday this year. I am still trying the tablets, but they don't seem to work too well and it makes me wonder if it is nerve damage, or something they are missing. I think it is a case of elimination and then see what you are left with, it is hard to believe in this day and age that medicine is still a lot of guess work. We have had one day of snow, so I suppose that is our lot for the year. Did you have a good Easter? It was very cold and miserable here, Did your boys get their easter eggs? Best wishes Mary
Have they ever done "Urodynamics testing" on you, or even a "cystoscopy" to look inside ypur bladder?
Might be a good next step if they havent.
Easter went well thank you.
Hope your feeling at least a bit better.
Take care, and God bless,
I have the same problem after hysterectomy for removal of 18.5 cm. ovarian cyst. urodynamics testing were negative for leakage. I was hospitalized two weeks ago because my electrolytes were all out of balance. Mr. dr. asked me to try drinking only 32 oz. of fluid daily. I am surprized, but it does seem to lessen the pressure on my bladder. It might be worth a try. I hope it will help you.
Marilyn, thank you for your reply. I would be interested to know what your symptoms are. Actually, I find drinking less than before helps. Just water, no coffee or tea, or alchohol! I had a cystoscopy and nothing was found in the bladder or urethra. However, I have heard that unless they stretch the bladder they don't always find anything. At the moment they think it is nerves that are sending pain messages to my brain, so certain pain blockers are the only way to go as there is no actual cure for this. But I can still feel the burning pain in the bladder underneath it, and when I put any pressure on the bladder the pain intensifies and the urethra is sore. So, I don't know if they are on the right track. It is interesting to know what happens in the USA because you often have access to different medicine. Hope to hear from you, best wishes, Mary
Hi, Mary - It is good to hear back from you. I hope you are feeling better. I know that less liquids helps me a lot. However, I still have symptoms of pressure on my bladder as if something is pushing on it. All tests (CT scan & ultrasounds and physicals) say all is in place. Everything works ok, it just plain hurts. I have to lie down when the pressure is really bad, and it sends pains into my lower back (kidney area) and down my legs. It also seems that it is nerve pains. I'm going to another urologist at Mayo Clinic mid April and I'll let you know the outcome of that appointment. I haven't given up yet finding an answer, but so far, nothing concrete for the pain. I do take Ultram 50 mg when the pain is really bad, but I try not to take them very often. Please take care. Good luck. Let me know if you find out anything else.
Hi Marilyn. Hope all goes well at the clinic in April. Let me know how things go. The nerve business is complicated. If you have had a bad infection or trauma apparently the nerves can continue to pass the pain signals to the brain and there is no cure for this. Pain management and pain-blockers are used and hopefully the brain will right itself and realise there is no pain. I think the important thing is, that a physical problem isn't overlooked by latching onto this 'nerve' thing. The pain-killers have to be the ones that block signals and it is trial and error. After that I understand that pain-blockers are more invasive, but not gone into that yet. I have the burning pain in the bladder and urethra, very similar to a bad case of cystitis which started the whole thing off at new year, although I had antibiotics to clear that up eventually and water tests now are clear. Usually the problem relates to women who have had frequent cystitis over the years and their bladder shows problems, but my cystoscopy showed nothing, hence nerve problem rather than insterstitial cystitis. Your symptoms seem rather complicated, and pain down the leg is strange, however nerves are a complex issue. I hope you see someone sympathetic to your problems, and look forward to hearing from you.