No symptoms when moving, symptoms when standing. Not PN?

[snupho]

This is exactly what it is like for me,

I was very active (weightlifting and running) and had symptoms sometimes after a run, but I just dismissed it as my body being silly. After a run one day I peed a bunch of blood, so I went to the doctor the next day. By the end of that week my penis was in extreme pain. TL;DR diagnosed with pudendal neuralgia at the Mayo clinic in Rochester.

Now, it hurts mostly when I am active, then later in the day laying down, sitting, will feel bad. I've stopped any sort of fitness regime. If I am moving such as walking or working in my backyard, I don't feel really anything at all until I stand still. However, the more active I am earlier in the day the more painful it is in the evening no matter what my position is. So now I just try to minimize how much I have to move to not pay for it later or cause an extreme flair up.

I've been in touch with Dr. Bollens who thinks I'm a good candidate for surgery, but I want to try to get seen by Dr. Bautrant as well for his opinion.

1. No, this is not common, but I have a theory and I think ultimately moving to reduce symptoms is paradoxical.
2. Later in the day, yes. The nerve becomes irritated to some degree during the day and symptoms are usually worse in the evening.
3. According to Dr. Bollens, symptoms of sensitivity, tingling, pain, etc., are "mild" irritations of the nerve. "Strong" irritation is usually associated with complete compression.
   My theory is that symptoms like ours are the result of an unfortunate bio-mechanical system in the pelvis that results in the pudendal nerve being rubbed or irritated in some way by surrounding ligaments/tissues. So, when we are active, the rubbing/irritation is occurring, but it is mild and light so we don't notice as much. Then later in the day, especially a day in which we have been active, the nerve gets enflamed/sensitive.
4. Yes, you have some degree of irritation of the nerve. It sounds very similar to what I have and I'm convinced surgery is the only hope for me. I take 2700Mgs of Gabapentin a day along with a few other things and it only barely stops me from having 10/10 pain.

I recommend you have a CT guided nerve block of the pudendal nerve to test for a positive diagnosis in order to weigh your options from there.