Backround: one day at 17 years old I woke up one day and had a sudden pain in my penis and a pressing lower right abdominal pain. Painful/frequent urination ejaculation and issues sitting. I went through a whole plethora of doctors sans diagnoses, eventually leading me to an Interstitial cystitis diagnosis that I wholeheartedly believed at that time because I could no longer eat any acidic foods. My 17-18 year old self went crazy with everything and I was an emotional wreck prone to drug use. I went to college and was eventually put on Valium/tramadol which actually seemed to work… fast forward a few years and depression/pain/drugs caught up to me again and I ended up in a rehab with a chronic pain program in Tucson… This is where things got weird. At that rehab I was given a tens unit. One night while using it on my abdomen and then lower back. I turned it off and woke up about 10 minutes later having uncontrollable spasms mimicking the tens unit but much stronger. My whole body felt weak, and after about 20 spasms I felt a complete numbness sensation in my penis and lower abdomen(the same spots which minutes earlier had been in pain). This of course freaked me out completely. After being reassured this was only temporary, I went on to move to California and while I was now numb I could still use my “tools”, and my pain had practically gone away so I was confused on how I felt about it. Fast forward to a year after that incident, I was in good shape, and had accepted my newfound numbness which had gotten better but nowhere near normal. I still had frequency and retention. Right after Covid hit I Suddenly had a burning red rash on my perinium, scrotum, and buttocks. It did not go away. I tried everything. 2 weeks after that, that burning “rash” spread to my entire body. I could not put on t shirts due to skin sensitive and the slightest touches felt like scrapes. I am talkkkg biblical symptoms… After testing for everything a pain doctor told me I had developed CRPS, likely from whatever nerve injury I had had in my pelvic floor this whole time. My pudental pain and sensitivity that was so local, had literally spread to my whole body. I won’t get into details but I almost took my own life during all this. I was given all the nerve pain meds known to man and they all didn’t work much. Eventually I went on klonopin plus gaba/cymbalta and boom my pain went away a lot. Still really bad but better, and I could live better. Of course I got addicted to klonopin and moved onto drugs and ended up in rehab again. And as soon as I stopped the klonopin, all my pain came back. The pressure in my abdomen returned and so did my symptoms. IE perennial, anal, penile burning, full off skin burning sensation.
Fast forward to now, I finally found a doctor that wanted to investigate these affected nerves that clearly caused all my problems. We are doing investigative nerve blocks. I recently got my first, a pudental nerve block and all my skin sensitive in that which it innervates was gone for the first couple hours, penile pain and numbness lessened, and along with that the nerve pain I felt in my face also went away at least while the lidocaine was active… this is obviously good but also kind of shocked me because the only pressure, at least that I feel like could be a compression/entrapment is in my abdomen near the Genitofemoral/illionguenal nerve, not my pudental. I guess maybe multiple nerves? My burning pain is in the perinium, anal area and scrotum/groin though which would point to ludental but idk. I was also told recently by a neurologist that he saw some irregularities in his ultrasound in that right abdominal area.
And he is investigating a hernia or a compression. I am also getting a Hip MRI.
I am ready to do anything to fix this. Like I would literally go to prison for 5 years if it meant I would even have a 50% improvement in pain. I’ve done pt meds, blocks…
i guess my questions to the community would be: did anyone have abdominal pain with their pudental nerve pain? I have a throbbing spot in my lower right abdomen since I was 17 which I always assumed was the cause of my genital pain. But the pudental block causing so much relief is confusing me…
Can an injured abdomen cause PN?
Can a PN compression/entrapment surgery heal numbness?
Any US doctors you would recommend I reach out to? Surgery experiences?
What else should I look into? And any tips in general?
I am honestly shocked I am still alive but as my body flares up again I am starting to lose hope, willing to work on things, but really just utterly emasculated in every way and dead inside. Really thinking surgery of some sort is my only option left.
Any responses or ideas are appreciated
