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Any Men w Neo having Urethral Burning?? HELP!
I previously posted about my Dad’s Continual Burning Issues but have not found anyone with the same or similar symptoms. The Uro’s have not been succesful in finding the cause of the burning flare-ups. Ocasionally he does get a nasty bacteria and takes some Levanquin/Bactrin/Cipro etc and that subsides but the burning recurs. To clarify….the burning is not when he urinates….it is constant (while sitting, standing, walking, sleeping, etc). I am looking for any answers/solutions/suggestios…whatever…to help my dad. He is losing his will to live and other than this nasty burning problem…..he is in good health. The bladder seems to be working properly with no issues.
PLEASE HELP…..I need someone out there that has had this or is going through this now.
Thank you!
Jackie
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8 Replies
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I will approach this topic with him again and see what he says. He never saw a psychologist……just his primary prescribed some mild anti-depressants to help him cope, sleep, etc. But my stubborn dad would not cooperate. He took it for a few days and then stopped…..that was a year ago.
Soon….I’ll be needing them…just to continue the fight, research, alternatives, etc. It’s taking a toll on me too and I am only 46!! I have always been a problem solver and solution oriented but on this one…..I have hit major road blocks and hurdles.
Let’s see what happens with the pain mgmt team tomorrow.
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Hi Harleygirl! My fear is that there is cancer in the urethra causing this burning but has not been found. He has been scoped and biopsied but all clear….yet this burning is driving him literally nuts.
I’m not sure what type of operation would reverse a neo into a ileal but if not too complex or dangerous…perhaps it is worth a look. My dad is 78….and not very strong now after the BC and RC. He has deteriorated significantly in the past 3 years…..lost so much weight…mental sharpness much lower, physical strength not there. It’s really very sad for me to see this happen to him.
I’m praying for a miracle! :)
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If his antidepressants make him feel like a zombie, he’s on the wrong one’s. I know lots of folks on different ones and it is just the opposite for them. They feel “normal” when on them.
When I tried Chantix for quitting smoking, it made me feel depressed and that is not a good place to be. No joy in anything. That was zombie like to me–the state of feeling depressed.
If his B12 is low, then that can be a cause.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mike,
That’s right…..a neurologist is for nerves….duh! LOL
I really don’t think it is nerves either but you just can’t be 100% sure of anything. I read up on Interstitional Cystitis and although this is primarily for women…..men have been known to have this too. Some of those symptoms are exactly the same as my dad’s (go figure). I read that a chiropractor or PT actually re-aligned the spine and took pressure off some nerves that were pressing in the wrong places for relief. Some women got immediate relief from the IC symptoms. I guess it is worth a try, right?
Whem he was in the hospital this last go around…the infectious doctors were running all types of tests….no fungal, no blood count issues, nothing except the e-coli found in the neobladder…and that took about 5 days to culture.
Yes, I believe he is more than just bummed out at this point….he talks about ending his life, not worth continuing, can’t go on like this, this is no life, there is no hope for me, etc. His primary has already prescribed some low dose meds for this but he REFUSES to take them because he says he doesn’t want to be a zombie. When he is feeling well…he is fine, happy, outgoing, etc….but lately that is just a few days out of the month which is what has him so down.
It is not easy dealing with a very stubborn, set in his ways male (yep…my dad), that has never had to deal with any medical issues other than this BC and does not tolerate pain.
He does get the B12 shots from his primary…that was very low. I do have a medical summary for him but I guess I need to update it now and include the tests run at the hospital these last 3 times.
By the way…..he has been on Cipro for the past 7 days now and the burning is not going away. They gave him the Cipro for this last strain of bacteria found…..something called Serratia??? not sure but in the family of e-coli. Doc said the lab recommended Cipro but it must not be working at all because the burning is still there….unless it is not caused by any bacteria/infection. This is the biggest mystery!!
Thanks again for all your help Mike. ANYTHING you think of….please write to me!! :)
Jackie
I am so sorry to hear that your Dad is having this awful problem. My Dad had continual bleeding from his penis after RC and a year after his RC it was discovered that there was cancer in the urethra which was then removed. He had the ileal conduit and not the neobladder.
If they could determine that it is truly the urethra that was causing the problem, an extreme solution would be to turn the neobladder into an ileal conduit and remove the urethra. Extreme, I know, but if the pain is as unbearable as you describe, then this may be a solution. Just a thought.
Jackie,
So sorry to hear about your dad’s problems. That is a long time for all of this to go on.
A nerve doctor is a neurologist.
It just seems like those injections of antibiotics clearing things up for a while holds some sort of clue to this. However, you don’t want to over prescribe antibiotics either.
It doesn’t sound like nerve damage if it didn’t start until two years after the surgery.
I wouldn’t think ‘salt water’ would be a problem but who knows about the bacteria in there.
Infectious disease doctor might be a good next step. You probably want to pull together all of his records related to this. Has his white blood cell count been high on his blood tests? I think Pat mentioned getting his B12 checked also. That is certainly something that should be checked. Have they also checked for fungal infection?
When you say he is depressed, do you mean just periodically bummed out or do you think he may be clinically depressed? If he is, you may want to see about getting some treatment for that.
If he doesn’t already have one, you might want to consider putting together a medical summary with him. List any and all medications (including vitamins, herbal supplements, etc.) that he takes on a regular basis, list surgeries/treatments, etc. Detail the various antibiotics he’s had trying to deal with this situation. You just never know what can be relevant so get it all down on paper in a timeline. Give that to the doctors as part of his medical history.
Sure hope he is able to get some relief.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi Mike!
Thank you for responding. My dad had his RC in Aug 2007…just made 3 years. The burning started a little over 1 year ago. He has been on and off antibiotics for about 2 years for one reason or another. It seems as though the doctors are quick to prescribe those antibiotics when the colonization reaches over 100,000. We have been to the ER 3 times this year with severe burning that he has not been able to manage. The rest of the time he has mild burning which he handles with Tylenol Codeine (which I wish he didn’t have to take so often!). After we went for a 3rd opinion in July he had the antibiotic shots and he got much better for about 2 weeks. He was well enough to go to a beach vacation and went swimming in the ocean and had a great time. Right after that…the burning started again and has been back with a vengeance since. Could the salt water have aggravated things?? I wonder….
The original surgeon did think that it was some type of nerve damage but that is not confirmed with any test so he prescribed Neurontin..that was back in January. He got better from the burning but his mind started to deteriorate so we stopped it……..a major side effect from that drug.
He is going to see a Pain Management team on Tuesday to check on the nerves from the spine that may be triggering this burning. We don’t know what else to do…….we are overwhelmed by all this and have run into so many walls. It’s so hard to keep him positive and motivated to keep searching for a solution.
Do you think I should seek a infectious disease doctor? What is nerve specialist doctor? Is that the same as the Pain Management group?
Thank you for your feedback….I appreciate anything you can offer that might help. My dad is 78 and other than this issue has no other major medical condition. I feel terrible that my dad is having to live like this and is so depressed about it. He is running out of steam. :(
Jackie,
I’m not sure if this could be related at all but I had burning that felt like urethral prior to getting my RC. My urologist checked everything out and thought that it was referred pain. That can happen with the urethra.
One thing you mentioned about this on the other thread was that it seemed to be better after he was getting antibiotic injections for a while. That may be a clue. It sure sounds like they need to do additional cultures to see if he hasn’t wound up with some sort of antibiotic resistant bug.
When did the burning start and how long has it lasted (except for that two week break where it seemed liket the antibiotics worked)? Have they been doing white blood cell count blood tests?
After an RC, just because they can grow something in culture dish, doesn’t necessarily mean there is an infection. The intestine used to create the new bladder is not a bladder. Any time I get tested it looks like world war 3 is going on in my urine but there is a difference between colonization and infection.
If it was immediately after the RC surgery, it may be nerve damage somewhere else that is feeling like it is urethral pain. There is often some nerve damage when removing lymph nodes in the RC surgery. I had pins and needles and numbness with occasional burning on the inside of my upper thigh from the lymph node removal. Lasted a long time, but clearly was not as severe as you father has. My way just a nuisance for the most part. It’s a a year and 10 months since my surgery and it’s still a bit numb there.
If infection gets rules out, you might want to see about nerves. It could be this is beyond a urologist (even top surgeons at this point) and a specialist in infection followed by a nerve specialist. Just thought. I’m no expert in this stuff but it might be worth checking out.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
