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RALP with bladder neck invasion and excision: Dealing with pain
Has anyone had RALP with wide margins and bladder neck invasion? I had 14 lymph nodes removed along with my bladder neck as well as all the surrounding tissue which has left me with debilitating chronic pelvic pain. I've tried 16 different meds, hydro distention with lidocaine and steroids, two different nerve blocks, and a spinal cord stimulator, but nothing has helped. Hoping there's something else I can try.
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Having pain like you describe is just not normal after a prostatectomy. I think it’s time that you need to see a specialist to figure out what’s going on and try to resolve it, Apparently, the doctors are seeing now aren’t capable of doing that.
If you can mention where you live, I might be able to give you the name of doctors in your area, who are really good at treatment.
You should be working with a palliative care doctor Moore pain management specialist. They specialize in trying to resolve issues people have with treatment.
Urologists, palliative care doctors, and pain management specialists treat prostate cancer patients who experience severe pain after a prostatectomy.
Pain Management Specialist: A doctor focused entirely on easing chronic or severe pain. They offer specialized nerve blocks, medications, and targeted therapies.
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1 ReactionHi Jeff, this is all good information. I am actually working with my oncologist at Atrium in Charlotte, the urologist who is a bladder specialist at Atrium, and the Pain MD who is also a bladder specialist. I have follow up appointments with all 3 of them in two weeks, but they appear to be out of ideas. If you know another specialist in the are please let me know.
@tbp64msncom
This guy is one of the top oncologist in the country
Duke North Carolina Durham
Dr Daniel James George GU Oncologist
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3 ReactionsI just saw your comment on implant thread, we have very similar cases and treatments. I too have had terrible pelvic pain since prostatectomy in fall of 24. Only now getting some relief since ending Lupron.
Hope your pain subsides soon, it’s such a drag. Felt like all I did was complain for a while, doc’s say nerve pain, maybe, I don’t like to take a lot of meds so there’s that.
Hopefully the pain eases up when my testosterone starts to recover. Since I posted this I got a second opinion from a neurosurgeon, and another opinion from a different pain specialist. Both recommend repeating the SCS trial, so I'm doing that next week and I'll let you know if it helps.