UOAA Discussion Board

I had my urethra taken out May 2nd but I still feel like it's there. My doctor thinks it could be related to sensory nerves, maybe phantom pain but would not be the one to prescibe any thing in that family of medication to me. He says there is nothing he can do. I an wondering if my pain management specialist can help. I can't take any medication accept for the anticonvulsant family such as Neurontin and Keppra but they are not touching the pain for me. Narcotics tend to make it worse. I can't take antidepressants and some benzodiazapines make it worse as well. I don't know what to do. I was trying to do some research on phantom urgency and get a sort of poll to see how long it lasts for some of you and when it startede. Right after my surgery I did not have any urgency to pee for 4 weeks. It just started and is not an infection. I am thinking about asking my Pain Management Doctor about trying something like Lyrica.

Does anyone have phantom urgency that is so painful they can't function? AM I NORMAL? WILL IT EVER GO AWAY?

Alley

It will go away! Just give it LOTS of time. I know it can be very strong in the beginning, but after a few months it should settle down. You can try to do relaxation things like concentrating on your breathing, sometimes if you are taught self hypnosis that can be of help. Also try sitting on the toilet till the feeling lessens or goes away. I am sorry you are having a rough time right now.

Hi Alley,

I had my sugery on June 14th, 2006. I too have still felt the urge to pee even though I now have a urostomy bag. I found sitting on the toilet relieves the feeling (as the other person who replied stated).

Just wanted you to know that you aren't alone, there are at least two of us with those "phantom" feelings.

Good luck to you,
Wendy K.

I had the same thing for a while. I had my bladder removed in2000. What I did when I had that feeling was just go th the comode and make my mind think I was using I was using it. I stoped haveing that problem after a while.

Don

I'm so glad I saw this! My bladder was removed in 2004, and I have had the phantom feelings also (thought maybe it was just me). I would sit on the commode until it passed. It seems to be getting better, but still happens at times, and I'm glad to hear that it will go away. Hang in there.

Hi Alley. I had my bladder removed in 2003. I still get the feeings of wanting to pee. Sometimes I even dream about it,,,haa haa haa. I know I cant pee, because its not connected. So I just go with the feeling. It remindes me of the good old days. Take care,,,Rocke.

I've had my urostomy since March 2005, with all plumbing removed. The first time I got a phantom pee urge I sat on the toilet not thinking, waiting for something to happen until I realized -- it wasn't going to. Since, it's happened numerous times. Thanks for the suggestion of just sitting on the loo until it passes. Sometimes it feels like you really have to go bad! My father lost a leg in Viet Nam. He used to get a cramping sensation in his toes in the foot that was no longer. I think it's much the same thing. The brain plays funny tricks on you!

I don't have a urostomy, but I have a similar problem...

I have a permanent ileostomy, and I had my rectum and anus removed. Still, especially after I've eaten, I'll occassionally feel like I need to release gas or (rarely) like I need to have a bowel movment. I looked it up, and it's probably just that the brain's nerves haven't relearned that there's nothing there yet. So it's doing something out of habit, and triggering what used to work.

People who lose their limbs sometimes have similar feelings. They call it "phantom limb syndrome," but that isn't really applicable to either of us.

I've found that is is happening less and less as time goes on. I hope the same thing happens for you.