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Help me please before I lose it all


#1

Hi guys. Just curious if anyone is up to my stage at the moment as I really don’t want my last testicle removed.
All started with a vasectomy at 21. By 23 granuloma. Then bilateral epidectomy the. Left orchidectimy. Now right one 17 years later is at fed up stage and can’t take much more pain meds than I’m on and gabapentin at max dose. Now a mass lump on the right and still a stitch in there on opposite end of lump (granuloma again I would say) dose of 140 mg OxyContin a day with break thru on top not to mention the antidepressant and everything else. My theory is if it’s gone maybe my meds can change to something not assisting in killing me


#2

Hello @Leigh,

Sorry you’re here but you’re welcome here. I’m 10 years in myself so I can understand how hard it’s been for you to be dealing with chronic pain from vasectomy for 17 years. I am surprised you have not found your way here sooner.

I’m going to be obnoxious with questions now. Where do you live? Who did your vasectomy? What is the progression from vasectomy to where you are now, dates of procedures and how you came to be advised they would help, outcomes from procedures etc…

I have always harped on documenting outcomes here. We have talked for a while about a formal mechanism for documenting bad outcomes so we have an archive for guys that have been hurt. The goal of this is not so much punitive but to change the behavior of providers to be up front with informed consent.

It’s also a good resource for guys doing research about possible issues with the procedure.

Thanks and again sorry you’re here.


#3

@Leigh I’m sorry you’re here as well. That’s such a long time to suffer.

I’m guessing you’re well aware that once you’ve had your epi’s removed, the only thing left is either denervation or removal.

Bilateral removal has worked for quite a few guys here, but you will need to replace your hormones for the rest of your life.

As @MikeO said, where are you located? Have you seen a PVPS aware urologist?


#4

Oxycodone might feel like it’s helping but depending on how long you’ve been taking it, it very well could be making your pain worse. There’s a lot of newer research on chronic pain and there are several recent studies that show traditional pain meds actually increase pain signals when used chronically. I went through a chronic pain class at mayo and the one thing they told me was NEVER get on pain meds. I understand, given your situation, that this probably isn’t easy to hear. I’ve been in chronic pain for 2.5 years and it’s hard for me to say it.

I’m assuming your left side is still painful or you wouldn’t be so hesitant to take the right side off. Can you elaborate? There’s a huge mental stigma to get over when going through bilateral orchidectomy but if I’d have known pre vas what I know now, I probably would’ve been castrated instead of vasectomized. Vasectomy is not good for your testicles. Period. I struggle to fathom how 2,000,000 sperm per day being disposed of by your immune system is good for your body either but Medicine is clearly light years from this conclusion. After your vasectomy the body begins to view your testicles as foe not friend and the only thing that keeps your immune system from whipping them out before you die is their shear size. Every day your body is attacking your testicles. Why should this feel good.

Clearly, fertility isn’t something you desire (me neither btw). After 17 years of chronic pain, I’d bet money your hormone levels are garbage. At this point, your other testicle is completely useless. If you had successful pain relief with the left side, why not remove the right? At least someone might actually help you get testosterone, and help balance your hormones the way your body is supposed to be.

I get that it’s a big decision. However, dont underestimate the catastrophe that even a painless vasectomy can be on your testicular health, and that decision was already made a long time ago.


#5

Sorry for the thread hijack here. @Choohooo are they referring to the usual opiates and heavy duty pain meds or are they including all pain meds, including OTC tylenol, NSAID’s etc.


#6

Opiates. Oxycodone and hydrocodone based stuff.


#7

Hey guys. Well finally good news
I saw the urologist team at box hill. He said he couldn’t help me apart from removal. Which I’m willing to do to get off lethal painkillers as they never tell you the affects when they put you on them. The government watches my permit and leaves the reducing up to me. Which mind you I have reduced by a lot already (hard to believe when I’m on 120mg a day with breakthru)
Well long story short… he knows of a special surgeon who has trained in this field in New York. As this surgeon said he had never seen someone go thru this for 17 years… I tried explaining its a male thing in your head that if you lose the last ball you will never have a normal life again… well it will have to be mor normal than the past 17 years and heap of ops later. He reckons he can do it and I may not lose the ball. Fingers crossed. They got me on Friday so I will update when I know.
I will go thru my chronology and list my operations for you guy and also the cocktail of killers they have had me on for years…
change is coming.
If it wasn’t for this site I wouldn’t have looked again as I was last told approx 10 years ago I have to live with this the rest of my life on top of androgen deficiency and everything else


#8

Understandable. Worst thing in my life isn’t the ball but the painkillers and the stigma behind them. I had no choice in the decision but now I have said they need to stop just dosing me up and fix the problem now. Not just bandaid it In pain management they tell u to push yourself… all good but on that amount you don’t know the damage it’s causing in between. Hence why I had to have the 3 spinal surgeries as I am a chef and just keep pushing thru service until back stuffs up.
But up in country Victoria they dont have the best teams. So now I’m in the city waiting to start life again.


#9

@Leigh …You’re very lucky that they will give you enough pain killers to kill your pain especially in this political climate. They keep trying to take my meds from me even though i’ve had nothing but bad outcomes from surgeries (and hence more pain), The more i get cut on the worse it gets. I’m considering having them both removed because like another fellow on this board said…no balls …no pain. And he seems very happy with his decission. And ive been in pain for over 20 years, and every surgery just makes it worse. I have no other choice but to use pain meds. Yes they are bad long term…i know that … But chronic pain for 20 years is even worse! I have tried to quit them several times. I would say that a person doesn’t have chronic pain if they can just quit them when they want. I just wish I had never had a vasectomy or ever had someone cut on something that was working fine. That was “my” big mistake! And I have regret it every day since i had my reversal. And almost every day after i had my vasectomy. Every doctor that i have talked to doesnt even admit PVPS exists. Good luck. Let us know if you have the other testacle removed…and does it solve your problem…because i would gladly trade my meds for a solution. Nuff said.


#10

I so wish that were the case. But even with the left removed I still get phantom pain which is nothing compared to the actual pain
Hence why I’m looking into it
This site has been great in helping me take the next step.


#11

so what is he going to do for you if he isn’t going to take the right one?


#12

I think it’s more denervation. He trained in New York and works in Melbourne. But the urologist I saw can’t do anything apart from removal as I was operated on to many times. So from what I am told he can actually find the right nerves and kill or numb them I think. No other pain management specialist has been able to help me so far as there are to many nerve endings in the testis and have tried 3 times to block the pain etc. nothing worked so far.
I’m hoping dr Katz is my answer to a somewhat normal life


#13

I admire you for trying to get things fixed. I hope for your sake that they don’t create more problems for you when they try to strip the nerves on your right side.

What was the spacing between your procedures? Was your left orchidectomy performed inguinally?

Also, how did your original provider deal with having a pain patient as a result of vasectomy? Did he pass you off to the next guy or was he the one that recommended the new surgeries to “fix” you. It would be interesting to hear the details of how you evolved to this point. It’s unfortunate that a resource like this did come into existence until the 2000’s. This place is a great resource for me who have been harmed by their vasectomies.


#14

I’m not sure what to say here, but I feel for you man.

I am blown away that urologists perform vasectomy’s on men in their early, to mid twenties.

I’m sure your story is like the vast majority far as no significant warning regarding pvp/s as an outcome, and what the treatments, and the success rates were before hand. They are not great.

I think your on the right track with your thoughts, and if I had to throw out my ideas, and/or opinion, I would be looking at removal, and HRT myself.

You have few options left here, and I would pick the one that stands the best chance in eliminating your pain permenantly. Ultimately, you must choose what’s best for you. You have to live with the outcome, nobody else.

Good luck brother.


#15

Hey mike. I will try to answer as best as possible. But honestly I can’t think anymore from all the meds - more so depression I think now. (As pain gets worse -so does mood)
At the moment I am willing to try anything as it’s a better option than what I have in store for myself if this doesn’t work. 17 years is long enough now!! Pain levels can get right up to the nine now I rekon. Other times it’s at the usual 3-4 with 120 mg OxyContin plus breakthru
It was in 2001 I had vasectomy
2003 I had granuloma cut from left
2005 had epididectomy
(Woops time for a surgeon that is not a butcher )
Saw mr Duncan in Albury. He was hesitant to remove left testi. Six weeks later I was in there and his team paid for a prosthetic testi. That was lingual left side I think
Went thru pain management ( tried pain blocks etc)
Right testi got to the level of left not long after
I was told back then there was nothing left to do but the legal shit now. It’s not the money etc I need. It’s the pain relief (worth more than a million in pain relief)
Now I have my regular doctors and regular pain team and the government watches my permit as I’m over the morphine scale
I know this has stuffed my life and all I want to do is live like everyone else without thinking the world is watching you
I’m now told that all the specialists love me because I’m like a guinea pig. It feels it now!!