In May of '99 I started having issues with sensitivity in the penis (surface level) to light touch & hot & cold. After spending numerous MD visits with PC Physician, Dermatologist & Chiropractor I remained without an answer or any help. I tried everything but pain meds at that time (topical creams/steroid, cortisone shots, allergy tests, bloodwork, urine tests). After 1-2 yrs it went from a pain of 8/9 to 2/3 and was tolerable.
Fastforward to September 12, 2010 roughly, and once again it is back with 8/9 pain. When I say pain, I mean as a nuisance and uncomfortablility, I just want to be clear that I'm not an agonizing 8/9. More like having a thorn in your heal while walking, but you can't get it out! At this point, knowing past problems without any answers, I went straight to a dermatologist and he felt it to be nerve related as do I at this point. I went then to my PC physician and he referred me to a Neurologist in the area. This Neuro had never seen this before in the penis and with my symptoms for light touch, hot/cold sensitivity and the condition not being a problem when sitting or any time at rest, only with movement, he definitely believed my condition to be Nueropathic in nature, which in Neurology is called Allodynia (very generic for Nerve damage in a peripheral area). He gave me some cream that was made at a compounding pharm, but only numbed the area and that didn't feel any better. Upon my return visit he suggested that he would speak with a Urologist at the hospital and run the symptoms by him and let me know what he thought. This Urologist had no answer as well. His suggestion was to go to a Tertiary MD that my see patients from different states. I gave my Med Recs to MD of Urology at a great hospital in my state and he and his team had no answer either. My only option at this point is Mayo or Johns Hopkins! I don't know what to do. It is very uncomfortable to walk or do anything because my penis rubs against underwear. Sex is uncomfortable and very difficult to be active with my daughter at 3. I am currently taking 300 mg of Gabapentin and it helps a little, but I want the problem diagnosed and fixed. Yes I have taken Lyrica but it constipates me which I have chronic constipation as well and don't need meds affecting that to. This is the short version of my condition. Can someone offer any insight as to what this might be and/or where I might find help? I am desperate!