Persistent burning pain after cystoscopy

3 years 10 months ago - 3 years 10 months ago #53624 by ilyanoor
Hi this is Ilyanoor

I'm a thirty year old male with hx of bladder cancer first diagnosed in 7/2015 and I had my TURBT at that time. Bx showed low grade Ta, I was doing well with survelliance cystoscopy every 3 months for one year, every 4 months and then every 6 months. My last cystoscopy was 40 days ago and doctor found a possible small nodule on my bladder that he biopsy the next day and it was also a low grade tumor.

It has been more than 40 days now and I still feel burning pain and as if i don't have control on the tip of my penis. I feel as if i'm leaking but I'm not. I went to my urologist three times for this problem and he keep telling me nothing is wrong with me and it might be psychological. I mentioned the diverticulum to my doctor but he doesn't think so. I can see there is small pocket close to my penis opening with some laceration. I had 6 cystoscopies prior to that without any problem. The burning pain after cystoscopy used to resolve after 2-3 voids but this time it didn't.
I'm waiting to get a second opinion in about 4 weeks.

Any advice and anybody who had encounter a similar problem.


Thanks and I really appreciate your comments.

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3 years 10 months ago - 3 years 10 months ago #53627 by Alan
Replied by Alan on topic Persistent burning pain after cystoscopy
Welcome. I don't think this is your head. I remember my penis was very sensitive at the end of my regimen for 7-10 days. 40 days is simply too long. I am guessing that you may have a cut from all of your scopes? Have you been checked for not only regular UTI's but exotic/unusual ones? Maybe even some fresh eyes per a second opinion at a center that does a lot of bladder cancer-a teaching hospital or major center like MD Anderson or Cleveland Clinic.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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3 years 10 months ago #53631 by Jack R
Replied by Jack R on topic Persistent burning pain after cystoscopy
Ilyanoor,

Your experience of burning and feeling of an incomplete void weeks after a cystoscopy describes my experience. They usually start to resolve for me at about 6 weeks, but then return on a random schedule. Not sure how long they could go on, since soon it is time for the next scope or TURBT.

I'm sure at least part of it is in MY mind, as I have been paying very close attention to the plumbing since I was diagnosed. My doc checked it out the first time, found nothing. I have accepted those residual feelings as part of the process.

Pyridium or AZO helps reduce the burning and the amount of attention I focuse there. See if your doc thinks if that would help..

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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3 years 10 months ago #53635 by ilyanoor
Replied by ilyanoor on topic Persistent burning pain after cystoscopy
Thanks for your response. The pain and burning subsided after 3-4 weeks and I was feeling better but still i have this funny feeling on my penis. 10 days ago The pain started again. Initially the doctor gave me a prescription for Macrobid ABs which didn't seem to help. I also got some uribel(New local anesthetic for urinary tract) it makes me constipated and dizzy without helping the pain that much.

I got some Uricalm Max pills OTC and I will give it a try hopefully it will work


Thanks

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3 years 10 months ago #53636 by ilyanoor
Replied by ilyanoor on topic Persistent burning pain after cystoscopy
Thanks for your response. You are right it my a collective problem from multiple scopes that i had so far and unfortunately I will keep having now every three months again.

I'm going to University of Michigan for a second opinion and I might transfer my care. Honestly didn't feel much pain during the cysto procedures and the last 4 ones has been under local anesthesia, it's the aftermath that I'm dealing with now.


Thanks

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3 years 10 months ago #53640 by Alan
Replied by Alan on topic Persistent burning pain after cystoscopy
I knpw the U of Michigan has a great reputation for bladder cancer!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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