Urethral Pain w / Bladder cancer

Raider,

I can't speak for all, but my first bout with Tis and BCG, I had minimal pain. Once recurrence came on and I went through another full treatment of BCG, the urethral pain was unbearable and pain meds were needed to mitigate.

My oncologist stated that this is not abnormal, however, does not occur with all patients.

A third, short round (three instillations) were given to me in December (very long story so we won't go there now). I experienced the same pain and additional meds were provided.

It really didn't do much for my New Year's Eve celebration, I'll tell you.

So this one person, has in fact experienced this and was explained that one may experience it, but it too shall pass.

Hope this has provided to you some insight.

Having been through years of pain due to a urethral stricture caused by the initial treatment of my bladder cancer, and having been through cystitis caused by BCG treatments and all kinds of other grief caused by my bladder cancer, my stricture, and the treatments, I have to say, that I don't think one can easily tell urethral pain from bladder pain. And now that I've ended up having a radical cystectomy, all that pain is one of the things I do not miss.

Oh my gosh he has been told he doesn't have bladder cancer,or any type of cancer I was diagnosed with TAG2 bladder cancer around the same time he started with these symptoms. At first I thought he just had sypmpathy pains for me, I'm doing well he is just getting worse.

I'm happy to hear it wasn't pudendal pain it is hard to treat. Not that Bladder cancer isn't..

Regards,

Anne

Anne,

The update on me with the urethral pain is that it is gone!! Before I was finally diagnosed with CIS after 4 years of symptoms and telling multiple urologist of my pain he thought it could be the pudendal nerve. In fact before we started treatment for the bladder cancer he still wanted me to see a specialist for the pudendal nerve. I hate to say I knew more than my urologist but I knew that the bladder cancer was causing the urethral pain. My thought is that my bladder was so red and irritated and damaged that any pressure on the pelvic floor was pushing and pressing on my bladder thus causing the pain.

After my first 3 treatments of BCG the pain was subsiding and now after 6 treatments the pain is gone!. How does the urologist not put this together?

Best of luck to your husband!

My husband has been in bed and in and out of hospitals with the same pain you are describing over the past three months. They have not been able to find a diagnosis we are waiting for an appointment at Shands. I've done my own research on all of his symptoms and all point to pudendal nerve entrapment. Not many doctors are aware of the condition, the only test that came back with any type of issue was that he has some type of neurophy in his body.

For the pain not to be there he has to wear a Foley Catheter. Best of luck to you I fully understand what you are going through, this has been devasting for him.

Thanks for responding Alan!

I haven't golfed in months even before I was diagnosed because I was getting really bad urethral pain. My feeling looking back is that my bladder was so red and angry that the twisting and turning and contracting of muscles in the pelvic floor were irritating my bladder causing the urethral pain.

I was also getting the urethral pain from sitting for a period of time, again my feeling is that it eas caused due to my aggrevated bladder and the pelvic floor.

I guess I will have to wait for the end of the 6 treatments to see if that eases up.

Regards,
Mike