I’m really at a loss on what to do. The pain at times is unbearable. But it isn’t constant enough that I feel any medication would be useful.
First hand accounts of nerve ablation is tough to come by, and the thought of there being no backup plan is not appealing. Honestly, if it came down to having the nerve cut or the testicle removed, I’m leaning to just have it removed. There doesn’t seem to be much reason to keep it if there’s just a lymph channel and an artery to the testicle.
It is scary how clueless and lost most uros are in a situation like ours. If its copable try and hold off as long as possible, maybe set a timeframe for yourself and say after x amount of time I will look towards taking a risk with surgery.
Just remain positive in your own mind that you are not at the end of the road yet and you do still have options.
Only people who will ever understand what you are going through is guys on here like myself who have experienced simular, no urologist,so they cant tell us to live with it. I am currently 12 days post removel and still have a raw and sore incision at my groin, but this is nothing compared to a bad ball pain !
I’m still really confused with what choice to make in terms of what to do. Initially he suggested doing an embolisation procedure to see if that would help the varicocele and reduce or eliminate the pain but the last time he only mentioned removing the epididymis and having the ablation surgery done. He’s been pushing for that pretty hard, almost from the first time I saw him last year. The more research I do the more worried I get. There’s times where the pain is unbearable, and there are times when I’m perfectly fine.
How is the pain on right side? Have you tried papaya seed powder? One thing I wish I tried before I had my epididmis removed, my pain also came out if nowhere and was pinpointed in the epididymis, looking back now maybe there was some kind of congestion that occured naturally.
It was 4 years of discomfort before I had the surgery, my pain was intermitting and sensitive to the touch, my pain was so localized to the epididymis I honestly thought removing it would help, problem was cutting into and already pissed of area just caused alot more damage.
The quote above is an interesting and tricky scenario, and is something I can relate to, although I don’t experience pain on the unbearable level, or I don’t anymore anyway. Whatever the case, I can still relate to being perfectly fine, to having the same ole problems again. I have no definite answer for what might be the root of the problem in your case, although a varicocele could cause the symptoms your experiencing. And like you, I do have a varicocele, and in my case, it had given me problems many years prior to the vasectomy, which I understand you’ve never had.
I’m not telling you what you should, or should not do, but I would personally advise against a varicocele embolization procedure for pain relief. I’ve had it done myself, and it made me worse. Over a period of a year~ or so, i suppose I did make some progress post embolization, but I still have intermittent pain, and occasional crazy side effects from that procedure.
The problem with varicocele embolization for pain relief is, it’s an obstruction type procedure that causes vascular back pressure. Sure, it’s said to help some men with both pain, and fertility, but in my experience, I wish I had the tie off method, AKA varicocelectomy, which doesn’t guarantee success, and carry’s risks of its own. Perhaps that method causes vascular back pressure as well, but if I could do things over, that’s the procedure I would’ve had. Varicocele embolization is permanent, and obviously there’s no way to undo the obstruction/s should you regret it afterwards.
I was actually warned that varicocele embolization could make me worse by a single doctor/uro out of a handful of knowledgeable pain docs/Uro’s/interventional radiologists. I wish I had listened to the doc that advised against it advice, and not put stock in the idea that the others were right in the sense that I’d likely be ok. Vascular congestion was what the single uro/doc was concerned about far as possibly making me worse, and in hindsight, I’d definitely say he was right.
So, what if your issues have nothing to do with vascular congestion, and/or a varicocele? Hmmm…
I too would advise against a epididymectomy. Every bit of research I’ve read regarding outcomes, statistics, etc is/are pretty grim with that procedure, but that’s not to be confused with the idea that it’s never helped a single man in history. ‘Some’ knowledgeable pain docs/Uro’s are totally against epididymectomy, and would advise skipping that surgical step, and moving onto de-nervation. Personally, I would have a unilateral orchiectomy before I tried de-nervation, but that just my call, and doesn’t have to be yours. Statistically, de-nervation certainly has a decent chance to solve your problems, but it also has a chance at being a failure, partial relief, and making you worse.
It’s hard to know what to do, whom to trust, whom to believe, etc when dealing with these problems. Obviously guys that were made worse by specific procedures will advise against them, and those who were made better, or improved will recommend them.
Has orchitis, or orchialiga been discussed with you as possibilities? A few interesting links below…
And like @1986raz advised, I would give papaya seed powder a whirl before I jumped into anything surgical. It may be a waste of time, and/or may not help you, but it’s a conservative treatment that carry’s little to no risk in comparison to surgical procedures. It’s unlikely you would regret giving it a try in the long run, and/or big picture.
If any surgical procedure makes you worse in the long run, you will very likely wish you had give conservative treatments a fair shot beforehand.
Figured I’d throw a blurb in regard to my quote above. I also know of a guy that had a varicocele embolized for fertility reasons that had zero pain prior to the procedure. Post embolization he was a pain guy, and it worked him over pretty bad. He had no history of lower back pain, sciatica, hamstring pain, hip pain, etc, but post embolization he had pains in them areas. Like me, he seemed to make some progress over time, but last I knew, he wasn’t a-ok. This was well over 5~ years ago.
If I know of one guy, there has to be many out there.
Another blurb for you here @ThatRobGuy, I also know another pvps guy that had varicocelectomy and de-nervation at the same time years ago that was considered failure. He also had varicocele embolization ‘at least’ a year+ afterwards. He didn’t experience any new pains post embolization, nothing, nadda, zip, and like me, his embolization procedure was considered a failure as well. Post embolization my varicocele showed no change in size, blood flow, nothing.
Would be nice to hear some positive stories regarding varicocele corrective procedures, but I honestly don’t have any to share with you beyond random testimonials I’ve read elsewhere online.
Rough choices. For me personally, my preference in sequential order for medical intervention are:
Blocks - yes, they have risk but I have had success with them in my back (post fusion) and some luck with them with scrotal pain, just not long enough.
Reversal - I think the clean up effect and putting the genie back in the bottle seems to help the most. The downside is that it’s quite invasive.
Neurectomy or Denervation - I’m still trying to figure out which one I may opt for here 12+ years post-reversal. I’m leaning toward a neurectomy with a plastic surgeon but have not ruled out denervation with a urologist.
Inguinal Orchiectomy - just remove the whole damn thing. This, of course, is risky in that the nerves get whacked by a urologist, not a plastic/neurosurgeon.
Epididectomy - Somewhat facetiously, I’m listing this OPTION after it’s already been removed with everything else. I cannot make sense of what happens to sperm that the testicle keeps producing. I’ve also heard from too many that the scar tissue that forms on the testicle where the epi was detached from it becomes very rough and painful. Not an option I think I’d ever consider.
Thank you everyone for the replies. @raising4girls I haven’t had a vasectomy. The forums for testicular pain are fairly limited. It is either here or cancer forums. After the multitudes of ultrasounds and blood work has ruled out any cancers.
@RingoStar the doctor I’ve been working with said it was considered long term epididymis with chronic orchialgia. The doctor said that there was no swelling on the side that had originally hurt, it was within a reasonable size between the two, and in the subsequent ultrasounds they didn’t notice any size increase or decreases.
@1986raz the right side hurts off and on, but it is almost a different pain. It is very clearly in the cords, and is a different type of pain than the left side. (Left is a burning, squeezing, throbbing, pulling, and in the testicle itself and at times in the epididymis.)
Overall the embolisation seemed to be the one that made the most sense. The varicocele is about 1.5x1.5 cm and is noticeable if you’re just looking at me. (Well, if you’re looking at the scrotum.) The pain on the left is very random, but when it has been hurting, any sort of sexual activity (intentional or overnight) causes the pain to ramp up considerably. I have not taken an orchiectomy off the table. I realise that it is by far the most drastic of the options, but it could also be the one that is the most effective. The doctor briefly mentioned it to the other doctor that was in the room at the last visit. But in all seriousness, if it would do the trick, I have no need to keep it. He seems to be concerned with fertility. It is at the absolute bottom of my list of concerns. I know the forum that I’m in, but if he said “oh, if we do a vasectomy, you’ll be fine in a day.” I’d tell him to do it right then and there.
More thoughts, more decisions. Still confused as what to do next. At this moment, only the right side hurts, left side is okay. There’s no predicting it.
The quote above makes me hesitant to believe you suffer from a varicocele. Prior to my embolization, laying flat on my back, or being horizontal period would always make things better. But, who knows, I certainly don’t know everything, nor do I know the details of 1000’s of guys with painful varicocele’s, their corrective post op stories, outcomes, etc.
In your case, I’d be surprised if when you lay flat the varicocele doesn’t deflate. The act of standing, or being vertical should cause a varicocele to inflate due to gravity. For me, post embolization laying flat didn’t help matters anymore. In fact, it made it worse, yet I’d wake up pain free every morning. Hard to say what’s going on with you, and our cases may not be comparable.
When I said embolization is an obstruction type procedure, in theory, it’s somewhat comparable to having a vasectomy (minus the cutting etc etc), except for its obstructing a blood vein, and unlike a vasectomy, and in theory, there should be another route for the blood to escape. For better or worse, it can, or does cause vascular congestion, not spermatic congestion. Very similar conditions. Some of my mentors in pvps pain forums back in the day were shocked I was even considering the procedure. In hindsight, and now that I’m not blinded by the light of optimism, I can understand why they were so concerned.
I remembered there’s a guy on this site that had multiple varicocele corrective procedures many years prior to his vasectomy. Seems he had varicocelectomy possibly several times, and had embolization last, and claimed it did the trick. So, I do know of a positive outcome via embolization, sort of. Unfortunately, he had a vasectomy, and everything went haywire from there. No update from that guy in many months.
Hard to say what you should do, seems several of us have given you some decent advice. A popular saying back in my day was, ‘what works for one may not work for another’, and vice versa. The thread below has some interesting images taken during my embolization procedure, and you may find them interesting. Good luck with whatever you decide to do.
If you check out the images taken during my varicocele embolization procedure, you’ll notice that once my internal spermatic vein is obstructed, and/or embolized, the blood doesn’t take another route as suggested to me by multiple interventional radiologists beforehand.
If the blood had taken another route, it would’ve shown up in the images, especially when I bared down. It simply didn’t happen. That said, I’m not sure these guys know what their talking about, or if I’m just some sort of freak case. Idk.
Yea, I’m not sure what they mean beyond their straight forward interpretation, if anything. It does sound pretty straight forward. I’m pretty confident that if you search the internet regarding testicular nodules and weather or not they can be painful, I’d guess you would find many men find them to be painful.
I have a nodule that’s comparable to a BB yet smaller in the area that I refer to as my ‘hot spot’ behind my left testicle where I believe I definitely have more than one issue going on for many years. The nodule is actually on the mid rear and to the left a bit. I’m not sure if it’s part of my epi, a bulge in a vein within my epi, or on my epi, or on my testicle near my epi, idk. I’ve often thought it was a tini hydrocele in the past, but I’m not thinking so anymore. Idk. Whatever it is, it can be painful, it’s definitely a nerve pain generator, it inflames sometimes, gets rather hard and sensitive at times, and it never completely disappears. I didn’t have this ‘tender nodule’ prior to the vasectomy.
I’ve had ultrasounds done in the past, and they didn’t turn up anything beyond a grade 2 varicocele which has given me problems pre vas, and post vas, and definitely isn’t the ‘nodule’ in question. One of at least three ultrasounds I’ve had done in the past picked up a tini hydrocele/s, and it wasn’t the last ultrasound I had done. Tini hydrocele/s didn’t show up in that one.
I’ve lived with the ‘nodule’ for many years. I don’t see docs/Uro’s about this stuff anymore because in my opinion, and in my case, I feel it would likely be a waste of time and money. I’ve just learned to live with and/or deal with it in hopes that it stops bothering me, and/or resolves itself one day.
Good luck with your new game plan, and keep us posted.