Hello my story and worrying

[PRESCOTMUNN]

Hello,

I'm Benjamin and had originally lower back pain then urge to urinate for almost 4 years. My current symptoms are below:

I have penis alloydnia, which has been helped a bit by lyrica and cymbalta. However, it still hurts when I shower and dry. Worryingly I know get burning bottom of feet and some burning patches of pain that come and go on legs arms and neck. I also wake up with a pelvis that feels its in concrete. The urge to pee is often always there. I can sit down reclined in seat without pain and sometimes sit normally without much pain but the alloydnia increases. I can still get pain also lying down. Anyone else have similar issues? I'm. Worried I probably have nerve centralisation issues

[Violet M]

Have you been to a doctor for a proper diagnosis? Your history and clinical exam are important in determining the diagnosis as well as ruling out other possible diseases such as multiple sclerosis, polyneuropathy, etc. There are some people with pudendal neuralgia who develop central sensitization. Allodynia is one of the symptoms of PN. Typically it is in the area innervated by the pudendal nerve but it can spread throughout the pelvis. I developed allodynia throughout the pelvis and abdominal region when I was going through the worst of PNE. All of that is gone now. I did not have any allodynia on my arms or lower legs/feet -- just some foot numbness on the right side due to the piriformis muscle being in spasm and pressing on the sciatic nerve. I also had frequent urge to pee. The pudendal nerve innervates the bladder sphincter.

Violet

[PRESCOTMUNN]

I have diagnosed myself. I had 3 bladder cystoscopy and all normal. Uti checks all normal and prostate normal. Mri was also normal a part from 2 herniated disks but not pressing on any. Nerves. I get pain in upper right thighs too. It's the urge urinate bothering me the most. I suspect pn or piriformis syndrome. I am booked in to see Dr de mello pain specialist listed under pn hope from Manchester. Do you think he would help diagnose me? The UK is pretty poor at these things on NHS. We don't offer surgeries either I just want the constant urge to go.

[Violet M]

There are some medications that can help with the constant urge to go while you are in the process of figuring out a proper diagnosis. Tricyclic antidepressants or possibly pregbalin (lyrica) are some drugs you could consider taking temporarily for symptom relief until you get the proper treatment.

I have heard good things about the UK physical therapists who treat PN. Are there any on our PT list at the pudendalhope.org website who are near you? Since you have a history of lower back pain you probably want to be evaluated for any musculoskeletal problems such as sacroiliac joint dysfunction and pelvic misalignment that might be contributing to your problem. I don't know much about Dr. de Mello. You can do a search on his name in the upper right corner and see if there are any posts about him on this forum. You may want to consider traveling France or Austria to a PN specialist if you can't get answers in the UK but before traveling you could at least try some of the UK PT's and see what they say.

Violet

[PRESCOTMUNN]

I already take 450mg lyrica and 60mg Cymbalta and urge still there.

[Violet M]

Cymbalta did not work for me either. Lyrica wasn't available yet when I had PNE. You might want to start with amitriptyline (elavil) because it is often the drug of choice for bladder symptoms. You can read more about it at the following link: https://www.health.harvard.edu/diseases ... l-cystitis

Violet