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Are you Disabled or unable to work because of PVPS?


#21

I was a firefighter/paramedic for the last 14 years. I had my vasectomy about 3 years ago and started having PVPS about 6 months after. After an few different procedures, I ended up having a denervation/neurolysis of the spermatic cord. This was the procedure that would end up causing the nerve pain that I have now. This pain caused me to become disabled as a firefighter, and earlier this month I ended up being medically terminated and then hired on as a dispatcher. Good because I’m still sort of working in the field that I love, crappy because it cut my pay in half. However, if my disability through my pension is approved, it should put me close to what I was making before. Fingers crossed!


#22

Thank you for all of your service to your community. I am so sorry that you also have been through this! My son also had the denervation surgery, and it did not help his pain either. I sure hope that your disability comes through! Even better, I hope someday we can come up with a way to help this kind of pain.


#23

+1 Thanks for your service to your community.

Crazy how this ‘simple snip’ can bring anyone to their knees.

Have you considered some other drugs to help with the nerve pain? Opioids don’t work so great for neuropathic pain and you’ll just get hooked on them and need more.

Can you get medicinal marijuana? It’s helped my nerve pain tremendously. So has alpha lipoic acid 600mg per day. There’s been a fair bit of research in Holland, Germany etc. on alpha lipoic acid helping neuropathic pain, with pretty favorable results.

There’s not much that helps with neuro pain except for (sometimes) lyrica, nortrptiline, gabapentin, amytryptiline.
Apparently methadone and ketamine help with neuro pain, but that stuff will mess you up.

Good luck to you.


#24

It’s funny you mention that. Florida has just started medical marijuana, but neuropathic pain isn’t an approved reason yet. My Dr did prescribe Marinol however, which is man made THC. The Marinol helps, but it has another benefit. If you were the type of person that was worried about marijuana showing up on a drug test, now I have a prescription that shows up the same way on a drug test as marijuana. It definitely helps. Much more than the opioids and without causing half of the long and short term issues.


#25

Amen to that. It’s crazy because my GP would sooner give me a big ol’ bottle of Tylenol 3’s or Oxycodone before he’d ever consider marijuana.

I’m not trying to paint tylenol as dangerous or anything, but lots of people die from taking tylenol or oxy’s every year, either through overdose or liver failure - but when was the last time you heard of someone dying from marijuana?


#26

We’ve tried a reversal, several antidepressants, pelvic floor therapy, hydrocodone, gabapentin, multiple rounds of antibiotics (in case of infection), nerve scrambler therapy, cannabis in edible, oil and inhaled form. He had a cord block during his reversal and we think it worked temporarily, but everyone has told us it’s too risky (risk/reward ratio) to do on an ongoing basis. So, we’ve basically exhausted our resources.

We’ve heard some people have good results with Lyrica. Our insurance (we’re just on state Medicaid) wouldn’t approve it, so my husband’s doc was trying to go thru the process to prove that all the other medications tried hadn’t worked, and that Lyrica was a necessary option.

I’ve got a few natural remedies I’m looking into, but so far, we’re just in a really sucky holding pattern. :frowning:


#27

jsh - Your wife and I should connect! haha Raising a family with this awful condition is NOT easy! How many kids do you guys have?

Jenn


#28

I have three little ones- 6,4, and 2. And ive had to cut back quite a bit with work. Having pvp with little kids makes the urgency to get better all the greater since these are the ages they are the most active. Also, because of their height their fists and legs are drawn like a magnet to my balls whenever we play haha. Its sad that wrestling/playing with my kids is the most stressful part of my day. My heart goes out to all of us dads whose families are affected so much. Your husbands lucky he has such a supportive wife. My wife is the same.


#29

I’ve been on long-term disability from my employer for just over 3 years. I have been diagnosed with pudendal neuralgia / pudendal nerve entrapment as a result of scar tissue forming over the femoral branch of the pudendal nerve following my vasectomy. I’m in constant pain, emanating from the base of my penis through the pudendal canal & to the coccyx. Needless to say I cannot sit down, and I worked a desk job. My income is half what it used to be, and thankfully my wife does well. We were just preparing to buy land & build out dream house after the vasectomy. Obviously, those things didn’t happen & likely won’t ever. I’ve been told by numerous doctors that there is no procedure they can do that will help, and that the risks are too high,so this is shaping up to be a long ride.


#30

@holliday50 I’ve read your story over on pudendalhope a bunch of times. My heart goes out to you man, I’ll bet you weren’t told a damn thing about chronic pain from a vas either.

It’s crazy how the pudendal nerve got damaged from a vas, but it’s in the scrotum too, so anything’s possible. Most guys here seem to have damage to the GF or II.

Do you get any pain at the tip of the penis? It seems like the pudendal nerve would be responsible for this, and although I do get that type of pain, I have zero pain in my perineum, so I really doubt it’s a pudendal issue.

In my early days I was really thinking it was a pudendal nerve issue, which is why I went to pudendal hope and read your story.

Sorry you’re here, but thanks for sharing your story.

Have you reached out to a PVPS doc? I wonder if there’s anything that could be done, maybe even a reversal to help cut out some scar tissue.


#31

I have almost the exact same pain except it does not affect my coccyx. Sitting just hurts. Can I ask you how your diagnosis was made?


#32

@mikeO he has the same handle over on the pudendalhope forums with a lot of info about it. IIRC it was ultrasound or MRI that confirmed nerve entrapment. Must have been massive amounts of scar tissue to even be seen on imaging.


#33

Sure. As @vasregret stated, I have a good deal of detail on pudendalhope, but I’ll give the abridged version here. I had seen a few urologists locally, and they didn’t seem to have a clue what was going on. I then reached out through a program through our health insurance where they have some leaders in the field review your medical records. Those doctors recommended that I go to UT Southwest Medical Center in Dallas, as they have a good Urology dept. The urologists there quickly determined that I didn’t have a “urology” problem, but that I had a “neurology” problem, and they already had an appt for me the next day to see somebody else. They performed a series of nerve blocks to rule out various nerves. From the symptoms, they suspected pudendal from the start, but the others are far easier (and cheaper) to test, so the process is to rule them out first. Once they were ruled out, I went to get an MRN-guided pudendal nerve block injection. It eliminated the pain completely, but of course, that relief only lasted around 28 hours or so, after which, they pain came back on with a vengeance. As FYI, my coccyx pain really became more of an issue following this injection. I was diagnosed with PN/PNE. I went back down there for a 2nd trip shortly after that, where they did an ultrasound and saw the scarring.


#34

Actually, that’s why I’m here. I want to get in front of an expert in that field. I’ve been told that there’s nothing that can be done. I’ve been told that removing scar tissue carries the risk of cutting the pudendal nerve, which is a risk nobody has been willing to take. I’ve also been told that since my body has so aggressively formed scar tissue in the past, that even if something like this were successful, I would very likely just form new scar tissue in it’s place. Despite all of this, I do want to at least talk to a PVPS expert, so I wanted to come here & research that possibility. I’m coming up on the 4-year anniversary of this procedure, and it’s really starting to hit home that I might have to live the rest of my life like this, and I can’t stand it. I’m young (just past my 42nd b-day) and have already all but lost 4 years of my life, unable to do the things that I have enjoyed in the past.

Worse, I can no longer sleep. I used to take ambien to go to sleep, because it numbed the pain and helped me sleep really well. Without it, I just can’t get past the pain. Laying down, closing my eyes, all I feel is this incredible pain at the base of my penis, and my mind just won’t shut off to allow sleep to come on. About a month ago, ambien just suddenly stopped working. I had tried a couple of different sleeping aids prior to using ambien, which didn’t work, and the doctor sent me a new one about a week ago, which strangely worked for 2 nights and then no effect. It didn’t dull the pain, but brought on heavy drowsiness. So I’m back out there, trying to find a long-term solution, if one exists.

I don’t really get any pain up to the tip, but honestly if there was a “little” pain, I wouldn’t know it, because of the severity of the pain below.


#35

I am 10 years in. You are preaching to the choir on that one. I have stabbing pain at the base of my scrotum where my but meets my leg meets my scrotum. I had a bilateral incision vasectomy. The cut on the left was really high up and the doctor yanked hard to pull out the vas and he went through some structures I don’t think he had to. I have ridges of painful scar tissue in my scrotal skin where he made the incision. I remember after my vasectomy thinking it was wierd where the stitches were. My reversal was the only procedure that brought me any pain relief. It worked thank god in taking the top off of pain that would normally wake me up from in the middle of the night.

I hear you on the lying in bed thing with pain/discomfort. It’s the worse. My advice to you is get off of the Ambien. It’s like a fast acting benzo and it will mess you up. I suspect you would be able to learn to fall asleep if you were off of it for a period of months and made sure you got enough exercise during the day to make you tired.

Sitting hurts man. It just hurts for me and it always will. The only relief I get is when I go on vacation. After about a week things start to feel much better.


#36

I’ve been off ambien for a month now. It was really hard at first because I had been on it for 3 years. I’m hoping that some of my issues are being caused by effects of that, and that they still have some time to wear off & improve. I’m not getting any exercise at the moment, as I just haven’t been able to find anything that doesn’t cause significantly more pain. It’s a vicious cycle, as you know.


#37

It takes a while for your nervous system to get back to normal when you quit drugs like that after having been on them for a long time. Have you tried gabapentin? That can help with sleep and it also helps with nerve pain. I will take one at 3 AM if I’m flopping around and usually the second half of the night is much better.


#38

@holliday50 You may also want to try alpha lipoic acid. I stopped taking it a few weeks ago, because I thought it wasn’t doing anything, well lo and behold, my pain got worse and it was actually waking me up in the middle of the night, which is something that I haven’t had happen in about 9 or 10 months. I went back on it and the pain lessened.

It seems to help me a lot with burning pains that I have from what I suspect is GF or II nerve damage during the vas.

I’m not trying to sell you some BS supplements, believe me, I’m the last guy in the world to believe in stuff like that, but there really is research behind alpha lipoic acid for neuropathic pain. It’s commonly prescribed in Germany and the Netherlands for folks with diabetic neuropathy.

I was on lyrica and nortriptiline for six months and I can tell you right now that the alpha lipoic acid is far more effective than those drugs, with ZERO side effects, plus it’s like $25 for a 4 month supply on Amazon. I take one 600mg tablet before bed and it helps a lot.

You may want to consider a reversal too. Will it fix you? Who the hell knows, no one really does, but perhaps just cutting the vas end out of that scar tissue will help, even if the rest of the scar tissue is left intact. It might not ‘cure’ you, but you might get some relief. At this point it sounds like all you can do is experiment with surgery, which sucks.

I’m one day out from my reversal and I still have the same nerve pain as before, but I think my balls hurt less already, which is surprising. Hopefully I’ll get some relief with time, and I hope you find some relief too.


#39

I’m on 2400mg of Gabapentin daily. Been on Gabapentin since 2015, and on that dosage for about 15 months or so. It definitely cut the pain down to “livable” range, but it’s obviously still really bad, and the pain is only ever manageable when I manage my activity. Sitting is still unbearable, riding in a vehicle is a nightmare, on account of the vibrations. Before Gabapentin, though, I was sitting around with an ice pack on my junk nearly every day just to get through, and spent days lying in bed.

@vasregret, I’m willing to try about anything at this point, so long as the risks aren’t too great. I’ll look into the alpha lipoic acid supplement. As for the reversal, I definitely would try it and am looking into it. I live in NW Arkansas though, and I don’t want just any local doctor around here to do it, given the unique nature of my problem. I’m of the opinion that I need an expert in this field that understands those risks, and that’s what I’m trying to find. Thanks for the help, and I hope you get some relief as well.


#40

You’ll definitely have to travel for a reversal, no doubt about it. Dr. Marks in Tuscon, AZ is probably the best, there Larry Lipshultz in I think Dallas or Houston, IIRC he was a pioneer of reversals, and then there’s also the PUR Clinic in Florida, although they seem to lean heavily towards denervation, which I’m leery of.

I know what you mean about local doctors. It’s incredible how little they know about this stuff, yet it’s shockingly common. For instance, I live in a small town in Ontario (less than 10k people) and my family doctor has another patient who’s been in pain for 3 years, and a friend of my wife’s had a vas a few years ago and is still in pain. Not severe pain, but I think it’s pretty obvious that he regrets it, oh yeah and he was never told about a chronic pain risk.

There’s a directory on here of PVPS aware uro’s and I hope you can find one you’re comfortable working with.