Hi there, I have been dealing with what I believe to be neuropathic pain since 2008, I was 35 years old at the time. It started with bilateral burning/pain over the sitz bones that would radiate out through the pelvis the longer I stayed seated. I also experienced some mild pain in the tip of my penis and burning with ejaculation. There was no traumatic injury that caused these symptoms.
I have had way too many tests to list them all and none were conclusive on the root cause of the problem. Sometime later I saw a neurologist who was just getting into the field of Pudendal neuropathy since my reading was leaning towards the possible casue of my symptoms. As part of my initial exam he gave me a rectal which was very rough and painful. After the exam I started to feel a warm liquid sensation in both legs with aching to the point I could no longer stand. When I called him back to let him know what had happened after the exam he did not have any answers and prescribed me Gabapentin (gradual build up to 2400mg per day) which did help but did not eliminate the pain fully. Before the exam if I stood up it was almost as if I didn’t have an issue as standing relieved the pain almost completely.
Overtime my condition started to get progressively worse and I can no longer stand at work, the neurologist suggested that I should try some nerve blocks on the Pudendal as he thought that maybe my problem. The nerve blocks were somewhat effective but did not relieve my pain enough to conclude that was my problem. After reading who this condition could get much worse over time I made the decision to have bilateral decompression surgery in 2011. Before the incisions were stitched up the area was spread with cocktail of freezing/numbing agents, for 2/3 days after my surgery I had no pain while sitting and I thought that the surgery was a complete success. After the freezing wore off the burning was incredibly intense and my sitting became more painful than before the surgery. Months after the surgery the burning that I had experienced before the surgery during sex and during/after ejaculation was improved by 70 to 80% and the pain within the tip of the penis was gone.
Since that time I have learned to live with the pain and discomfort and inconveniences of this disability. I did purchase a special U-shaped cushion which makes sitting somewhat bearable. There are times or activities that put me into a flare up meaning increased sit pain and burning that would last for anywhere from a few days to a week, for whatever reason sometimes the flare up starts a few days after the activity that caused it. At some point it would appear that central sensitization has kicked in as I started to get burning and pain on any pressure points that would make contact with a surface i.e. wrists touching laptop, elbows resting on couch, knees on carpet etc.
Recently, my condition appears to have taken a turn for the worse as I now have increased burning/pain with sitting. I’m also experiencing warm sensations in my legs and feet along with tingling, when I sit on a toilet my feet tend to start to tingle and fall asleep as if there was compression on a nerve or a restriction in blood flow. I'm starting to wonder if my condition is vascular, neurological or both. I really want to find the root of the problem but wonder if it’s too late at this point?? I was thinking about looking into ketamine infusions but not sure at this point. Any thoughts or suggestions as to how I could find the root of my problem would be greatly appreciated.