Hello Kimz, Welcome to our Pain Management Community. I am sorry to hear about your phantom pain. My heart goes out to you!
Phantom Pain can be very difficult to successfully treat and/or manage. Most of the Phantom Pain I've seen has been due to the loss of a limb. We haven't had many concerns or questions regarding Phantom Pain in our Forum.
First let me provide you with a link to our Kidney Forum.
You are always welcome here. Please don't leave our forum. I'm just wondering if the Kidney Forum may have more or additional information for you.
It sounds like you've done all the usual and customary things searching for an answer to your pain. I suggest that you consult another PM Clinic - or another Urologist. I've found Clinics and Physicians associated with a large teaching hospital to be on the cutting edge of medicine. If you haven't been to one it's worth a try. If you have been or are being cared for by a large teaching facility - than a consult with one of our nationally known clinics may prove beneficial. Again, worth consideration.
All the literate says hoe challenging Phantom Pain is to manage. It's a trial and error process. There are a variety of medications. When one isn't effective another, often in the same family can be tried. It can be a long process. Maybe you've been down that road. If so - sorry - I have no way of knowing your history.
Have they tried a TENS Unit? Sometimes the electrical impulses can disrupt the pain signals.
Acupuncture is often used in Chronic Pain with varying degrees of effectiveness. It may be worth a try.
There are newer treatments often utilized in treatment - such as a SCS (Spinal Cord Stimulator) or Deep Brain Stimulation. If these options have not been discussed it may behoove you to seek another opinion. Physician's willing to think outside the box may provide you with some answers.
I hope something I have offered will be of help. One of our members may offer more suggestions. Please keep in touch and let us know how you are doing. We know Chronic Pain and how it disrupts our lives. I'll look forward to hearing from you again soon.