New Member: Pelvic Pain, Post-Vasectomy Pain, PN/PNE?

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New Member: Pelvic Pain, Post-Vasectomy Pain, PN/PNE?

Postby raising4girls » Mon Dec 25, 2017 1:34 am

Thank you for this forum. I've been a regular on similar forum for post-vasectomy pain, but believe my ailment may be closer to this group than that.

I live in Cleveland, and all treatment described below has been at the Cleveland Clinic. Male turning 53 in a couple of days.

My groin pain started in 2005 following a bike ride, also 8 months a vasectomy. Treated for post-vasectomy pain resulting in vas reversal in mid-2006. Five months later, I became pain-free which lasted 2 years, then a 6-month relapse 2008-09 (not from bicycling this time). I took Celebrex and Neurontin for that bout, and became pain-free by April 2009 which lasted 7 wonderful years. Bicycled 1,500 miles per year without issue.

The pain was never classic PVP, but always a combination of scrotal and the surrounding region. I had no knowledge of chronic pelvic pain or the pudendal nerve and the urologists who treated me never introduced those as issues.

April 2016, following my first bike ride of the year, my prior pain patterns returned. Saw 3 urologists who thought I should have spermatic cord denervation, but my pain this time was worse right where the bike saddle met my pelvis between the legs, so I resisted. Yes, at times in the scrotum, but the between-the-legs and around scrotum and perineum has been more pronounced. Pain Management suggested a pudendal block and pelvic PT about a year ago. Ended up with 2 pudendal blocks. Also had a block of the spermatic cord. These courses got me 75% better and I felt I was on my way back to normalcy from April 2017 - July 2017, but then the pain returned in July. Should've taken it easier, I guess. Pain has been steady past 6 months, so I returned to pelvic PT and to Pain Management

Pain Management performed a block of the GF nerve and then pulsed RF of the GF. That has dramatically reduced the scrotal pain. The perineal and between-the-legs pain has remained.

Perineal pain is the worst.

Pain Management has now suggested pulsed RF of the pudendal nerve. I can't disagree, and it appears to be a relatively low-risk option. I've read other posts on this forum and it looks like PRF has mixed results. I'm Ok with no progress as that usually is a learning experience, but, of course, worry about being made worse.

None of the other classic PN/PNE signs such as anal or penile pain.

My theory is that I have damage to the perineal branch of the pudendal and/or posterior scrotal branch of the pudendal. P

Another potential data point - I developed lumbar issues in the mid-2000s, mostly just periodic aches but L5/S1 degraded so badly by 2011 that I ended up with fusion in late 2012. Limited to no back and leg pain since provided a watch what I do (no running, high impact, amusement parks, etc.).

My PRF of the pudendal is scheduled for Jan 2nd and would love to hear feedback on pros, cons, thoughts, insights, etc.
raising4girls
 
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Re: New Member: Pelvic Pain, Post-Vasectomy Pain, PN/PNE?

Postby Violet M » Wed Dec 27, 2017 12:18 am

Looks like you have already searched on PRFA on this forum and that the reviews are mixed. My understanding is that the procedure provides temporary relief and typically has to be repeated but you probably want to ask your pain specialist for more info on what you can expect as far as long-term results. I would also want to know from the provider how many of these procedures they have performed and what the risks are. Even if that provider personally may not have had any patients who got worse, they should be familiar with the most up-to-date literature and case reports at conferences, etc. on what the possible risks are. They have a moral obligation to be honest with you about what the risks are so you can go into the procedure fully informed.

Like you, I had primarily perineal pain, no anal symptoms. Dr. Bautrant confirmed that the perineal branch was primarily what was affected. You may have read about the anatomical variations, especially with the inferior rectal branch of the PN coming off of the main trunk in different places in different people. This can account for the variation in symptoms between people.

Good luck with the procedure if you go ahead with it. You may experience increased pain temporarily after the procedure.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: New Member: Pelvic Pain, Post-Vasectomy Pain, PN/PNE?

Postby raising4girls » Wed Dec 27, 2017 12:46 am

Thank you for the response. I feel confident with the pain mgt. doctor I'm dealing with and did discuss the risks. Being 20 months into this bout with no end in sight but seeing that the problem seems to be pudendal (and perineal in nature), I think this is the logical choice.

I freely admit, however, that I don't have a lot of choices in front of me, and that's why I came here. It appears that there are a handful of physicians who really know and treat pudendal issues. I've been looking for a someone to "quarterback" my situation, and the pain mgt. specialist seems like the only one with a plan who also takes the time to explain the options and his thought processes. Urology doesn't appear to have any solutions from a surgical standpoint; I've already done the vasectomy reversal and, in truth, I had SO related my case back in 2005 to the vasectomy that I just jumped into reversal to get the vasectomy un-done. My sincere belief is that the reversal didn't do much for me and that I spontaneously healed. In other words, I think my problems back then were pudendal knowing what i know now, but no urologists we even contemplating that. In fact, one told me there weren't any nerves where I was feeling pain!!!!

I see many here have had a series of imaging and intensive diagnostics to identify their condition (branch of the pudendal, etc.). Any suggestions on who I ought to contact to be my quarterback in the event I don't get relief from the PRFA? I don't mind traveling, but would ideally like one in/around Ohio or a few hundred miles. I almost went to the Dellon Institute to see Dr. Williams, but as I became more convinced my problem was pudendal and not the spermatic cord, I cancelled. Might see Dr. Dellon, but he's not back to Maryland 'til April. Any recommendations you could provide would be hugely helpful even if for a 2nd opinion.
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