It’s been a while since I posted an update on my own condition. I’m edging closer and closer to some form of surgery, just not sure which.
A background, this is my 3rd bout of one-sided (left) scrotal pain since 2005. The first bout started after my last bike ride of 2005, lasted 13 months, and had a reversal about midway through. Right after the reversal surgery, the doctor stated I was not clogged but was “actively leaking” from both tips. All along, he felt the granulomas were my pain source and he appeared, at the time, to be right. I was pain-free from late 2006 through April 2016 other than a 5-6 month relapse in 2008-09, my second bout, that was cured by rest, celebrex, and gabapentin. The results of the second bout also led me then and lead me today to believe I have a neuropathic component to my pain. During that 2nd bout, I identified a “hot spot” (former forum moderator Dr. Ellis’ term) in/at the head of my left epi.
This bout is now 31 months old, ups and downs, and it also began following bike ride, first out in 2016. After 31 months, I’m now back to where it all started but with a lot more knowledge. The worst moments included severe perineal pain, but that’s been at bay for nearly a year after pelvic PT and pudendal injections. I believe that was run-of-the-mill pelvic floor tension, not pudendal neuralgia.
I wake up most mornings pain-free unless I sleep in a bad position. Activity and movement gets the pain cycle going. As many have experienced, no support is bad, but too much support is bad, too.
When on Lyrica (which my insurance won’t cover), the pain remains completely totally focused in the scrotum on this hot spot. When on gabapentin, it radiates up into the left pubic region.
I’ve never had the flu-like symptoms, chills, etc. that some have experienced. My T-levels have been 650 and 760 during this bout, and PSA has been 0.7 - 0.9.
I’ve seen and talked with 4 different specialists in the last few months:
- Dr. P - gave me a left spermatic cord block w/botox on 6/25. Really sore that evening, then had good pain relief first 2 days, then a week of status quo pain, then 5-6 weeks PAIN FREE! I was doing great from around 7/7 through 8/20! Wonderful vacation, thought it was all behind me. Pain returned around 8/20.
Dr. P. believes I am a good candidate for SCD based on this and my favorable result to his “mega block” back in April, 2017. That block’s results lasted a couple of months.
Dr. Shoskes (uro at Cle Clinic who is only uro in Ohio to perform SCD and is one of the highest-volume providers of SCD in the US) - Saw him on 9/7 and he gave me an in-office spermatic cord block. The pain in my “hot spot” went away (a numb feeling). I was able to touch it without wincing. He’s willing to do SCD. He doesn’t have the same bedside manner as Dr. P., and I worry that SCD is his only weapon. I’d like to work with a surgeon who, if necessary, would do orchiectomy.
Pain Mgt. at Cleveland Clinic - Saw him on 9/12 and told him about experiences with Dr. P. and Dr. Shoskes. He admitted he had fired all the bullets he had (nerve blocked, pulsed RF ablation) and felt I should go forward with SCD via Dr. Shoskes. Ending my script of Lyrica.
Dr. Williams at Dellon Institute - GREAT appointment on 9/24, so glad I went. I may go forward with him, but he was the best diagnostician I’ve seen. Started with re-run of my history and then an exam. He found my hot spot and said “that’s your epi…has anyone suggested epididymitis.” I said yes, but that the uros felt my epis were still flaccid and that sperm count was OK. I also mentioned that two uros don’t believe congestion causes pain. He didn’t react.
We started with a II/IH block up pretty high as Pain Mgt. did. I walked the halls, sat with legs crossed, anything I could do to spike pain for about 30 minutes. Then he returned. I suggested he re-do a scrotal exam like he did pre-block. I about came off the table. So, clearly, the II/IH is not part of the equation. That jives with the result I had from my II/IH block back in 2016 and the general view that the GF gets nicked more often in a vasectomy than the II/IH.
Then he did a GF block, again US guided. Again, above the scrotum, but down a bit lower than the II/IH block. Got some of the topical agent on my sack. That was worse than the injection. Same routine. Walked, stretched, etc. This time I was already noticing pain reduction especially around my hot spot. He came back after about a half-hour and did a scrotal exam. NO PAIN! I mean he bounced my left epi like a basketball and it didn’t hurt. He admitted surprise based on my pain being epi-focused but agreed the GF is the culprit. He said he’s like me to come back for another repeat-experiment but, at this point, he DOES think I’m a good candidate for GF removal if I think the numb feeling in my groin is worth trading for scrotal pain relief.
- Dr. P. (again) - repeated the cord block/ablation with botox about a month ago. This time, not much, if any, benefit thus far.
At this point, I THINK SCD might work, and I THINK GF neurectomy might work. I see both as risky, but I also think I’ve done enough to validate their merits. I’m not a guy that can’t function or work but I’m in enough annoying (not debilitating) pain that it’s wearing me out. After 31 months, I don’t think this is going away.
My self-diagnosis is one of three possibilities:
- Some scar tissue inside or near the epi is entrapping or pressing on the GF or branch of the GF.
- The GF itself is damaged near the epi and the epi presses on it.
- The reversal failed and the epi is in pain that’s being felt by the GF. Maybe the same scar tissue responsible for the reversal failure is entrapping or pressing on the GF.
Either way, I’ve had three recent and a fourth a year ago positive responses to blocks. I might be able to add a 5th and 6th from the Cle Clinic’s Pain Mgt. block and ablation of my GF, but each one was followed by bouts of pelvic pain. That’s when I was playing pain “whack-a-mole” and I’m not sure if I got anything out of those or not.
BTW, Dr. Williams criticized Pain Mgt. in general by saying their pride in using a minimal amount of anesthetic. I told him I wasn’t sure about my GF blocks and he said they probably didn’t hit the nerve because Pain Mgt. guys don’t use enough. He loaded me up and clearly numbed the GF. It was actually nice being awake so I could watch. My Pain Mgt. guy almost bragged that he only uses a spoonful. He probably missed it altogether.
I’m throwing a couple Hail Mary passes in the coming weeks but don’t expect any results.
Doxycycline - been on this for 10 days and GP agreed to extend for a month. I doubt this is an infection but feel like it’s worth checking one more time. Where would it have come from since my last scrotal surgery was 2006? Why always the left side but with a remission 2009-16?
Scrotal US - want to see if there’s been any change since mid-2006 such as growth in size.
Semen Analysis - going for one more SA. Last SA was only 10MM which could mean left side is closed, of course, but at nearly 54, I’m not sure what my count could be expected to be.
Lastly, in about a week, I’m seeing a surgeon at the Cle. Clinic who performs lapropscopic neurectomy to get a 2nd opinion on GF neurectomy.
I’d love to find a way to do a one-sided SA but have been told that’s risky and expensive and haven’t found anyone willing to even try it. If I could prove left-sided congestion, I’d probably opt for orchiectomy. Right now, I’m pretty sure Dr. P. wouldn’t do orchi without first trying SCD. At the Cleveland Clinic, if I go for another cord block and do not have pain reduction, I think he’d perform or refer for orchi.
At this point in my life, I can’t see my way to a paid-for reversal.
I’m very interested in hearing your thoughts, if you think there’s any more homework I should do, and if any of you are in the SCD-under-no-circumstances group.