Hi Everyone, I'm Brandon

[ga138650]

New to the forum and believe I have either CPPS (as a result of Prostatitis) or Pudendal Neuralgia. '

My symptoms include a vibration deep within my pelvis, a burning pain in my perineum (on and off - it also travels through different paths), left testicular pain (oh yeh, I'm a man!) and pain in the tailbone. I call it the TRI-fecta! Somewhere along the line, I must have really pissed someone off and they put a curse on me.

Hoping to gain some feedback on what has worked, what hasn't been successful and lastly, opinions on my next steps. At this point in time, I'm looking into Cryoblation of the PN or possible decompression surgery (if I pass all the nerve block test) w/ Dr. Dellon.

Look forward to hearing back.

[feastorafamine]

Pelvic floor therapy is a critical next step

[ga138650 in reply to feastorafamine]

I've been in Pelvic floor rehab for over a year. I had 8-9 weeks of little to no pain. I'm uncertain if it's the muscles in the pelvic floor or the pudendal nerve. I've heard that if its PN, you wouldn't get better w/ PT.....again, unsure. Searching for answers constantly.

[muchpaininoz]

what triggered it, do you know?

[ga138650 in reply to muchpaininoz]

I'm not sure, it could have been a business trip I was stressing over or my relationship with my wife. At one point, I was told I had prostatitis and this eventually leads to CPPS. I really wish I knew..

[Pelviccrusader]

I think you are way too early for surgery. If you can get to Dellon you can Get to Dr. Echenberg In Bethlehem PA. Go to his website and you will see the conservative Yet effective methods he employs. He helped me.

[ga138650 in reply to Pelviccrusader]

I just reached out to his office and made an appt. Although expensive, I'm willing to make the sacrifice to get better. Mind me asking what he has done to help you? Including your diagnosis, timeframe and pain level now? I used to read reviews on one's web-site, but doctors only publish the ones they want you to read. I don't know...doesn't seem real to me.

[Pelviccrusader in reply to ga138650]

Sure. Many with pelvic dysfunction have very tight muscles As a leading cause. Among the things that he does, he Injects With Anesthetic (which relaxes muscles) into multiple muscles Simultaneously and relaxes the entire pelvic floor. It is one of the safer approach that I have found. He reduced the pain level so I can start sitting again. The diagnosis at that point was pudendal neuralgia. He will spend a lot of time with you and cares about your outcome more than anybody else I have gone to. Hope that helps.

[ga138650 in reply to Pelviccrusader]

Is that the botox you're referring too or is it 'trigger point injections'? I'm doing the hydro-dissention now with Dr. Charity Hill and she does the trigger point, but I feel it causes a flare each time thereafter. Do you mind me asking if you're a man or woman? What test did he administer to determine you had PN? Was it an MRN or did he do the PN nerve block? I had one done and I felt as if I was going to explode. I'm honestly afraid to have one done again and will avoid it at all cost. I would love to know if I have true PN or CPPS. I'm confidant I have one of them. Last question (for now) - how long before you saw positive results? I'm assuming you're not in remission yet.

[Pelviccrusader]

And physical therapy-Liz Rummer in Boston. She found problems I had that nobody else could find

[ga138650 in reply to Pelviccrusader]

How are you feeling now?

[Pelviccrusader in reply to ga138650]

Still have a lot of issues-can’t get rid of the last 25% of pain but he made a lot of progress. Have hit a wall with Physical therapy and am going back to see him next month. 3 hour trip. Also have debilitating foot pain that seems to be related to the pelvic pain.

[ga138650 in reply to Pelviccrusader]

Missed this note. So, your at a 2-3 pain-wise now? Do you do the PT w/ myofacial and trigger point? I'm going 1-2 X's per/ week and not progressing the way I feel I should. I think I'm pushing myself too hard this time..

[ga138650]

Should have included more details. This began in December of 2016, when I started having horrible low back pain and buttock pain (could not sit for more then 5 minutes), which brought me to 25-30 doctors and none could figure out what was wrong with me. Eventually, I had to throw in the towel and go on STD as it effected every part of my life. I was a prisoner in my own home. Eventually, I researched and researched on my own and found that I had a torn labrum and FAI, which gave me a glimmer of hope that this could be it. I had hip arthroscopy in May of last year, ended up w/ POUR following the procedure and recurrent issues as described since. I've been in Pelvic Floor PT since March of 2017, so surgery in May of 2017, started up again in Sept of 2017, then by end of Feb 2018, was in remission (1-2 pain level). I thought it was a miracle, as if I had won the lotto - I was myself again....Only that was short-lived and my middle of May, I was back in the table with my butt-cheeks spread. I've grown accustomed to the internal trigger point and myofacial release.. I should really think positively that I can beat it again, but my emotions and pain take over and leave me in a tangled mess. I can reach my pelvic floor w/ the breathing exercises, but feel as if something else is triggering my pain. The PN/PNE keeps coming up and can't find ANYONE who is willing to make a diagnoses or at the very least, say, here's a script for the PNMLT, EMG or MRN to confirm. I see that there are ways to make the diagnoses, but who the hell writes the script? I will take your advice and it's much appreciated. Liz Rummer is probably too far to travel for PT and don't want to make a change just yet. I'm going to give my PT a solid 3 months to get me back into remission. I'm 4 weeks, 1 day and I'm about 10% better then I was at peak. I'm also 2 sessions into 'Hydrodissention' with Dr. Charity Hill and the Pelvic Pain Rehab in NYC. Not sure if it's helping or causing me to flare. Anyone try this yet?

[Jev1972 in reply to ga138650]

Where is your pain when you sit? Is it painful to drive a car? Does your sitting pain radiate into your upper hamstring? Sorry to throw so many questions at you😬 Your story is similar to mine.