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Urethral Pain w / Bladder cancer
I was recently diagnosed with CIS and have started BCG treatment. I’ve had urgency & frequency issues for 4 years and they’ve gotten worse up to this diagnosis. About a year ago I started to get pain in the urethra while urinating but it only happened while golfing. Then it started to happen maybe once a month for a short period of time, maybe a day or two. Back in June of last year I really started to get a lot of pain while golfing and in about October I had to walk off the golf course due to severe urethral pain. I now have pain weekly mostly when urinating, sitting also cause these painful symptoms.
My urologist doesn’t think the pain is caused by the bladder, that’s why it took so long to be diagnosed. I’ve always been treated for OAB and then recently he thought the pain was caused by a pudendal nerve entrapment. If I didn’t request the cystoscopy we would be trying to treat the so called pudendal nerve issue. I think my pain in the urethra is being caused by my angry bladder and that while sitting the pelvic floor must be pushing into my sensitive bladder causing the pain. When golfing or working out I think that the twisting and turning and muscle contractions and irritating the bladder causing pain.
Has anyone had these same issues? Obviously my pain has increased with the BCG treatment and going into my 2nd treatment I’m worried that this will get really bad by #6
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7 Replies
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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.
Joe PDiagnosed: 01/2012 – TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 – TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 – RCC
Working It
Mass General Hospital, Boston, MA.
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.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
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
Raider, I am a golfer also. With BCG I had increased sensitivity and pain for a day or so after it while urinating. Also, when it gets hot while playing I try and drink a lot of water but, sometimes I still get de-hydrated and I can get very mild pain.
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.Sign In to reply.
