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PVPS and Testicle Removal


#1

Hi All - I have a long story and am desperate for a solution. Wondering if anyone has had similar symptoms or has any advice. Here I will try to summarize my experience:

  • Had routine vasectomy performed February 2017 (as I write it is July 2018).
  • As I “healed”, started having horrible shooting pains from belly button to right testicle (on a scale of 1-10, about a 12).
  • Went on gabapentin (and later amitriptyline), help was minimal, eventually had umbilical hernia surgery because my symptoms were similar to umbilical hernia - but the surgery didn’t really help
  • Had some relief with steroid injections into my lower abs, but pain came back about a year later. Went for more injections in Feb 2018 but this time it was not effective.
  • June 2018 had surgery to remove spermal granuloma, hoping that was cause of my issues, but only seemed to make pain even worse.
  • Since this surgery have had constant testicle pain and discomfort - I am now 4 weeks from having that surgery. Have been to ER on a couple of occasions, various Urologists have just said to wait and see if I get better with time. Been prescribed pain meds (norco) where taking two of them kind of makes pain better, but even with THAT still feel pain and discomfort.
  • As some of you probably know, every day with this pain feels like a month, every month like a year, etc. I am wondering if anyone had this pain just go away with time. My urologist has discussed testicle removal, which I see as a very much last resort. I am wondering if anyone had their testicle removed and if it helped. I’m willing to do it, just wondering how long is reasonable to wait to do this.

Each day I got to sleep hoping to wake up without pain, but that day never seems to come. I have been depressed and suicidal. I don’t think I’d ever kill myself because I’m not quite that selfish and I have a family, but having a throbbing testicle 24/7 is no way to live. Did anyone here have similar experience and find anything that helped (other than testicle remove) and if you DID go as far as having testicle removed (simply from PVPS) are you doing okay? Were you happy with the results?

Life is too short to live with the pain I’m dealing with…just hoping for any help/support, etc. This is really killing my family and my wife - there have been times I want to kill myself. Any comments/advice, etc would be awesome…thank you!

-JG


#2

Removal looks a bit radical to me without trying other options personally, I would seek to cross verify the options with a 2nd uro specialising in vasectomy pain.

This article is a pretty decent guide to pvps and the statistics for each means of it’s treatment.

https://vasectomy-information.com/post-vasectomy-pain-syndrome-scientific-review/

Also take a look at this guide to the treatment of pain from a UK urologist.

http://vasreversal.co.uk/pain.html

You will see the treatment cascades largely agree on those two.

You need to find a good experienced urologist with a specialism in the treatment of PVPS , the index on the site here is a good starting point to work out who there is near your locale.

“Welcome to the worst club in the world”, as it is sometimes stated around here, sorry to see you here dude.

Does anyone disagree with the above or have info to add?

Also if the pain is making things tough on a psychological level, get straight to your doctor and be open about it. Get whatever additional pain relief and counselling you need to help cope asap.


#3

Here is the index of specialists, please read the cautions at the top of the thread re treatment s


#4

@jgemetti

I think if you polled everyone on this site, I’d venture to say a vast majority of us have had bouts of depression and numerous thoughts of ending it all. I went from having it all to being suicidal within two weeks of my vasectomy. I have checked into the hospital more than once because I wanted to kill myself. I don’t post this to brag but rather bring light to an unfortunate epidemic that’s common amongst this group. You’re not alone and never will be. We have our handles and anonymity of the internet but behind every name is a story of pain and suffering. We all understand what you’re going through. It sucks. It’s really really sucks. However, there are brighter days ahead and plenty of resources you can tap to get help physically, mentally, emotionally, etc.

Obviously it’s best to start conservative and move forward from there but I wouldn’t view testicle remove as some radical procedure that’s off limits. If that’s what it takes to get your life back, so the hell what. You aren’t using the thing anymore anyways!! The issue is, there is no real guarantee of success with any of these procedures so you have to weigh the risks prior to jumping in.

This site is a godsend and you’re welcome to come here with any question, complaint, predicament you might ever find yourself in. I can promise you that if ANYONE understands what you are going through, WE DO.


#5

Thanks everyone - appreciate the comments. My urologist suggests next we try a cord block (and then if that seems to improve things, MDSC). So I’ll go from there. The challenge is just being patient I think (and I’m extremely impatient by nature). So we’ll see how that goes. Just trying to think positive thoughts that one day this nightmare will be over!


#6

Try to work out if your pain is congestion or nerve damage related, there are a lot of herbal remedies available to help you which do work. Inflammation often plays a big part in pvps ( especially in my case ) , so if you reduce this, pain will subside considerably.


#7

I would compare the positive outcome numbers between reversal and denervation when considering what your next move is.

MDSC is a surgically subtractive procedure, where reversal is largely not.

Obviously I am Not in any way a doctor, but the outcomes I see from accounts on here from denervation can be quite mixed.


#8

For what it’s worth… I have a friend that had a testicle to get away from pain that involved a hydrocele near or in the testicle. It was removed prior to 1987 (when I met him) and as far as I know, pain relief was complete. So perhaps it’s an option if all else fails.


#9

How about a law where if a man has to have a testicle removed because of vasectomy his doctor must have one out too.

Fair?


#10

Sounds fair to me. But use a rusty knife.


#11

GREAT IDEA! Except my vasectomist was an old woman. The law would have to get creative with that one lol!


#12

Lol, I know I should not post things like that but it was just a thought experiment. Others would be that the performing doctor should have to pay medical expenses for patients that end up with crippling pain but only if the patient was not told this was a possible outcome. Etc. etc… Right now there is zero incentive and in fact there is disincentive to share even the AUA statistics which are on the low side.


#13

Boy oh Boy, Do I wish this on my doctor some days…funny how he retired after the lawsuit and after how much came out about his practices and what his partners thought of him plus past employees. I just wish (almost weekly/monthly) the jury saw him for what he did to me and my family, yes not out of malice but out of carelessness


#14

Hey Edgar,

Good to hear from you. Are you referring to your original provider that performed the vas or the removal? Or are they the same. You were brave enough to take action and I admire you for that. My wife told me she would not support me at all if I tried to sue and was fairly emphatic about it. I could go on about that but don’t want to hijack the thread.

I agree malice is not part of the dynamic of how we ended up here. No two mens anatomy is precisely the same, no two vasectomies are the same, and the skill and condition of the surgeons and their technique can’t ever be precisely the same. Having a friend that was an airforce surgeon though, he once told me that there were guys he worked with that he would never let operate on his wife. Getting your guy to retire may have saved someone else from a really messed up life and if you had anything to do with it that’s a good thing.

What’s your current status and treatment?

I still have intermittant burning pain in my left inguinal canal/groin/seat area. Oddly yesterday pain was low. Its maddening because I stopped taking Gabapentin earlier this week so it makes me wonder what good the stuff is. It’s a weird medication…


#15

Yes, The original urologist that performed my Vasectomy. My status is a s bleak as it was years ago. After trying Cryo/botox blocks with Dr P and not having great results plus all the fees and bills adding up we just stopped going to Florida for time being. My educated guess is that my nerves are very Hypersensitive because almost every Neuro drug I have tried over the years have had very bad results on my body and mind. From breaking out in hives all over my body to having jitter shakes (as if I drank lots coffee). I stayed on regimen of every 4-5 hour one 10/325 Percocet. But that has been to just try to numb the throbbing so after trying to get another opinion I was suggested to try Butrans 1 patch every 7 days. It works, I don’t get foggy,my pain levels stay at 2-3/10 mark and I can function everyday. My only bad ache is prolonged sitting in a chair at work and I just have to remind myself to walk around and get moving every few hours. But still get weird throbbing “episodes” at the cord in my scrotum and the scar site where the testicle was removed every few days. Intercourse is great only for a brief flash and then I get agonizing pain that makes this grown man cry and it lasts for few days so wife and I hold of longer periods in between.
Plus now I’m beginning to notice my urination habits are way off, it’s like I have a hard time to distinguish whether its a PVPS pain or is it “I need to go urinate” pain. I guess all the procedures that I have had got me out of whack. I already told wife jokingly and kind of not that I will be wearing adult diapers in next 10 years or so the way it’s going. I have brought it up to my family doctor and had round of antibiotics and steroids but it doesn’t really change anything so it is not infection of any kind. Also my Testosterone levels are low and fluctuating so I do the foam dose on the skin treatment to raise my levels.
Anyway , I Just take it day by day and week by week. Hoping and praying that Dr P or another doctor can come up with some for sure thing to try and get at least partial relief. I’ve always hated taking medications growing up and now I have to.