You probably don’t want to hear this, but yes, that’s exactly it, a roll of the dice.
When I went to see Dr. Jarvi in Toronto (he’s arguably one of the best PVPS uro’s in the world) he literally told me that they don’t know for sure what causes the pain and that I would have to ‘roll the dice and see what happens.’
There have certainly been a few guys that report being 100% better after surgery, but it’s not the norm.
I remember wondering why there hasn’t been a bunch of lawsuits over PVPS, but the sad fact is that medical malpractice lawsuits are really tricky. You basically have to die because a doctor seriously screwed up and failed to provide the ‘standard of care.’ Doctors know when they screw up, so they go into defense mode. Everything from their surgical notes to covering their asses by having their colleagues stick up for them and so on. Kind of like the stuff we’ve seen when cops screw up and their boys in blue come to their rescue. (I’m not trying to bash on LEO’s here, but there are some bad apples out there for sure).
A class action lawsuit can’t and won’t happen because there would be thousands of defendants. Who would you sue? It’s not one big machine, company or doctor that’s messing us up, it’s just a bunch of doctors with a cash cow procedure that failed to inform of the risks. Some docs haven’t done enough vasectomies to have a patient in chronic pain, but most have. Remember, pain is not death, so to doctors, we all had successful procedures. Treatment for chronic pain is an unmet need in healthcare, and chronic pain is not considered a health risk. If you had a hernia repaired today, you wouldn’t be told that there was about a 10% chance of chronic pain from the hernia repair, with some being debilitated. It’s not just limited to vasectomies and hernia repairs, chronic post-surgical pain can occur with almost any surgery, you just don’t hear about it.
I think doctors also don’t like to admit or warn of chronic pain from surgeries because it implies fault or liability and leaves them open to being sued. It’s like admitting they did something wrong.
Anyways, getting back to your situation, it sucks that you’ve been at it this long, and it really blows that you got worse from a vas-epi reversal. Personally, I don’t think that doctor screwed up or was trying to take your money, but I think he just didn’t know. A lot of docs have no idea about PVPS let alone how to treat it. Yet it’s shockingly common.
You can consult with Dr. Marks, although I’m not sure what you’re trying to accomplish. He’s a great doc, but he only does reversals. That’s it. He can review your ultrasound and MRI all you want, but at the end of the day, EVERY man with a vasectomy will show swollen epi’s regardless of whether they have pain or not. It’s actually amazing that more men don’t have pain. Everything on the MRI will look normal too, because it can’t show any nerve damage, probably won’t show any scar tissue, etc.
As to having a double orchiectomy, well that’s an extreme option for sure and you’d need to replace your testosterone for the rest of your life afterwards.
At this point, the only real surgeries left are:
Epididymectomy (removal of the epididymis - this surgery has only helped like ONE guy on the forum and made a few worse)
Orchiectomy (inguinal removal only as scrotal removal has like a 50% success rate)
Spermatic cord denervation (has helped a few guys here, has made quite a few worse and has done nothing for some).
It’s a crappy situation for sure, and all we really have is to roll the dice with surgeries and hope for the best.
You really need to find a urologist who treats PVPS. There’s a directory somewhere on this site. I wish important threads like that were stickied.
One question I have for you, is your pain strictly testicular/scrotal or is there pain up the cords, into your stomach etc?