Hello, Amir here from LA. I'd like to share my story in hopes that someone can shed some insight or help steer me in the right direction: My PN pain started about 8 months ago- a slight tingle/itch sensation in my urethra. Before I get into the details of how the pain worsened, a bit of a backstory-- I'm 25 and I have kyphosis (about 70 degree curvature now, but started in my teens) and so I started somking pot for pain years ago. Over time, I became depressed (both from the weed and from life stressors), and started taking Lexapro. I hated the side effects, but it numbed me emotionally, so I stayed on it for a few months and then eventually just stopped it. About a year later during a really intense emotional period, I started taking my old (maybe expired) stash of Lexapro and immediately started having intense paranoia, anxiety, etc. I impulsively stopped taking it again cold turkey b/c of the intense side effects (big mistake) a few weeks later and within a couple days I was totally manic. Before the Lexapro, my depression could get pretty bad, but I was generally very calm, functional, and did very well in school and at work. During the mania I was totally delusional, spending thousands of dollars, stopped sleeping, hypersexual, I even thought God was talking to me at one point, intense panic attacks, etc. (at the time I was so lost in the psychosis I had no idea anything was wrong with me). While I was manic, I rear ended someone and there was intense whiplash, but I felt no pain after (and thank god the other person who I hit was ok). Eventually my parents intervened and took me to a psychiatrist who put me on a ton of pills at once (I was totally manic and unable to make a rational decision about the meds, and my dad, not informed about medication, forced me to take them all)-- lithium, respridone, olanzapine, klonopin, gabapentine, etc... I came out of the mania and realized that I had a psychosis (which was totally overwhelming, it was like waking up from a crazy month long dream/nightmare). I stopped smoking pot, however the meds made me extremely ill. I was throwing up constantly, shaking uncontrollably, and just had a general constant feeling of uneasiness and anxiety. Like I wanted to crawl out of my skin my tremor/akathisia was so bad. I went to another psychiatrist who said it was mad that I was put on so many medications (and she also hesitated to diagnose me as bipolar-- she thinks I just had an awful reaction to the antidepressant), so she slowly took me off the meds and left me on just an anti-anxiety medication and later just a small dose of an antipsychotic because I was still having trouble sleeping and racy thoughts. I stabilized almost fully (this is a few months ago), started sleeping, and only had some racy thoughts in the morning. I even started driving again, seeing friends and family, quit cigarettes, etc. I felt I was totally on the right path and on my way to recovery. But it was around a month into this time period that I started getting extreme back pain again in my kyphosis area (thoracic) and then stared feeling rapidly increasing pain in my penis. I went to a urologist who ran every test imaginable, all negative. (Side note; I had an infection about a year and a half ago before I got mentally sick, but I was given antibiotics and everything went away). I had a digital rectal prostate exam, cystoscopy, etc, all clear. I was put on antibiotics for 30 days but the pain persisted (and worsened after the cysto). I then went to physical therapy with Stephanie Predergast who diasgnosed me with PN, but after seven sessions no improvement. I tried Elavil and Lyrica for a month, but didn't help at all and struggled with side effects so eventually weened off them. I then met with Dr. Sheldon Jordan, who diagnosed me with PNE, and suggested a nerve block. At this point my pain was a constant 7/10 and mostly at the tip of my penis (but also some burning in general in the penis). I was starting to feel really desperate and suicidal so I went for it. It reduced my pain to a 4 immediately after (pudendal and sympathetic nerve block), but I was left with that weird awful foreign body sensation like something was stuck or pulling inside my urethra. Within a day, all my pain returned, and then I started having extreme sitting pain (burning and spasms in my butt cheeks) and eventually burning in around my entire pelvic area. I can still get an erection, but orgasm doesn't feel the same/shurts, and I have very frequent and sometimes burning urination. It literally feels like there's a knife stuck and being pulled in and out of my penis all day long. At this point my pain is at a constant 9/10 and I'm struggling to find an answer. The only physical problems I suspect that could be related is my kyphosis, which has led to a few herniated discs (a particularly bad one at T9/T10), and haven't found anything glaring in the pelvic region yet. I also have congential cataracts in both eyes, and in the last two months I've developed floaters in my right eye where I had cataracts surgery about 10 years ago, so lately I've been thinking if I should do genetic testing for a potentional metabolic disorder or maybe something autoimmune (Dr. Jordan also did an FMRI and suggested that parts of my brain were "underdeveloped" and that I could have something genetic going on, however I've had a structural MRI of my brain which came back normal. I was also an excellent student and graduated top of my class at university, so his reading of my brain kind of baffled me). Other than genetic or autoimmune testing, I've pretty much done it all and seen every doctor I can. I want so badly to believe this is a TMS syndrome because I am really struggling again with my mental health (no mania-- anxiety, insomnia, and racy thoughts), but there is some physical evidence for pain and I was in a car accident during my mania a month before the pelvic pain started. I'm so sorry for the long story, but I was wondering if anyone has any insight, recommendations, suggestions or any thoughts on my very awful and weird case. Much love and thank you in advance!