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Neuropathic Pain - is there success stories out there?


#1

I’m wondering if anyone knows of anyone who’s nerve pain went away on it’s own without a lot of medical intervention? This nerve pain is scaring the crap outta me because I feel like if this is your issue, you’re literally screwed. After seeing what hubby is going through, I’m pretty positive he is all nerve issues. Burning pain in groin, pain in upper pelvic area and yesterday he told me it’s going into his abdomen.


#2

Yes, many have gotten better from purely neuropathic pain. Once again, your husband is so very early into his recovery, he could easily make a near full recovery by 12+ months.

Seems your husband has multiple possible issues here. From hernia, to pvp. Hard to really say what’s happening via text. The story reads like he is progressively getting worse, but with any luck, “he should” eventually plateau, and make some progress.

I’ve read tons of stories, and know of at least one local guy that took over a year to get better. He said what he went through was super bad, and looked at me like I was a sissy for having a reversal, etc, etc.

I gotta echo what others have said far as try n get some strength going on with the situation. Posting another OMG pain story about daily won’t help matters.

I used to email my specialist about daily in my early days, and got flat ignored. I was told an update every 2-3 months would be sufficient. It’s going to take time (basically, stop bothering me).

That wasn’t helpful far as I was concerned, but having gone through years of this crap, I understand what he was trying to say now.

I’d like to tell you your husband will make some progress in time, but with the hernia stuff complicating the story, hard to say what time will bring. Time will tell.


#3

@RingoStar I think it’s just because of the stories I read on here. It’s like nothing works for so many and it’s just a scary thing. Different drugs, different surgeries. Look at one “little” surgery did. I want some information before making decisions with my husband about what does or doesn’t work or further complications et cetera. It’s hard on your emotions.


#4

@Worriedwife1,

After my reversal my left side went from my bad side to my good side. On my right side I bumped myself and got a hematoma the size of a large marble/grape. It was painful and as I recovered I ended up having a really sharp pinching type pain that I think was compressed/angry nerves in that area. That has since completely resolved. It took over 6 months.

I have to say though on my left side, the burning got worse and worse until I got my reversal. The reversal eliminated the worst of the burning pain. It was kind of miraculous really. Unfortunately, with long periods of sitting I still get a really complex set of symptoms on the left. It’s a combination of burning, stabbing sensations.

I truly believe though my reversal removed an angry set of scar tissue made up of cautery and undissolved sutures. There was no way I was ever getting better as long as that was inside of me.


#5

Believe me, I know how hard this is to deal with.

Technically speaking, your husband doesn’t even have pvps until he hits the 3 month mark. Some top tier pvps docs would bump the 3 month mark to 6.

I’ve seen many wait longer, and report nearly cured by 12 months.

This is a big part of why I try not to encourage anyone to damn themselves to worse case scenario way to soon.

Given the hernia stuff, it just makes for an extra complicated story, diagnosis, etc. PvP may have pissed off hernia related nerves that were already at wits end prior to the vas, idk. Time will tell.


#6

@RingoStar I definitely don’t want to rush anything. I suggested reversal to my husband and he is so against that right now. He hates anything to do with surgery (who doesn’t). It’s just nice to know that there is some success stories out there especially related to nerve issues. He has an appointment in a couple weeks with dr. Jarvi and hopefully he can at least shed some light. No one in my little town knows what is even happening to my husband.


#7

@Worriedwife1, I’m sorry to have to welcome you and your husband to the pvp club. It sucks. It takes a heavy toll on men, their families, their jobs, etc. And worst of all, just about nobody understands, or is willing to beleive whats happening.

Seems everyone has been indoctrinated into believing vasectomy is a safe and simple, in and out procedure. Its nonsense.

Try to stay positive best you can. Understand that pvp is actually quite common, but we are never warned.

The best thing I could’ve gotten in my early days was some good prescription medications. Be cautious of them to tho. I know of guys that have had severe bad reactions to them. From grand maul seizure, to suicidal thoughts. I urge caution with all medications. Everyone is different.


#8

Peripheral nerve damage can take anywhere from 6 months to 2 years on average to heal. That being said it often doesn’t. Sadly, time is your enemy/friend. Rushing into things could potentially exacerbate the issue, but the decision to act is ultimately yours. Hopefully, Dr JArvi will have some ideas. Good luck


#9

Your husband should come on here and chat with us. He may want to compartmentalize from you/come on here since you are here while he struggles with this. If that’s the case he could come on here and PM some of us privately. I think his current attitude is both healthy and unhealthy. He probably doesn’t want to adopt the role of victim. Coming on here might be an admission he’s a victim and maybe he’s fighting to keep his dignity etc… He also maybe a little bit in denial. I totally understand that. It would be best for both of you if he gets to a place where he never identifies with us. I’m really serious about that. None of us want to be here. I think he needs to be open to the idea of surgery to correct his issue though. He is one of those 1 in 50/1 in 20 guys like the rest of us that may need that sort of surgical intervention. Those are real numbers straight from the AUA and CUA. Tell him none of us want to be here or want him here but there is really no where else he is going to find so much concentrated information on how to deal with this.


#10

So ultrasound came back and it’s not a hernia. It showed clear so I guess it is definitely post vasectomy pain of some sort.

So I’m glad I made an appointment with Dr. Jarvi to get my hubby in there. My husband will rub what he thought was the hernia because there’s a little bump just to the inside of his hip bone in his groin. What could that little lump be? Would that be where the clip is? It wouldn’t be so high up there I wouldn’t think. I’m so confused now.


#11

Probably a granuloma. Your husband had clips during his vas? I hate those things.


#12

Yea, could be.

@Worriedwife1, Theres actually a thread here titled “where are the clips placed”. It has a link in it that will teach anyone about that stuff.

I hope I didn’t sound offensive this morning in regard to my initial thoughts here. You’ve mentioned you have lost 15 pounds stressing on your husband’s pvps mess, and mentioned you could possibly need help yourself because of all of this.

I just hate to see you loose it somehow. I assume you have kids to take care of, and now a husband as well. I’m just a bit concerned, that’s all.


#13

@RingoStar . You weren’t offensive. I don’t get offended easily. You are right, this is affecting me a lot. More than it maybe should but our life was so uncomplicated before.
It’s the guilt of it all and I had time in the morning of the surgery to tell my husband he didn’t have to do it. He didn’t want to do it and I just told him he’d be fine. That plays a lot on my conscience (as it should).
I’m struggling because my mind just keeps going there.

I’m trying not to show my emotion at home. My husband and kids don’t need that. I am a planner, I’m a total type A personality, so not knowing what the future brings and having this wrench thrown at us because of an elective surgery is a really hard pill to swallow. It didn’t have to be this way and we did it to ourselves. I want to go back to the healthy and happy life that existed before.
But hey, I know I’m preaching this all to you guys who are living through it each day so you get it. I know I’m not living the pain but I’m still in a dark place like I’m sure some of you were too.
Im also frustrated because upon talking to my doctor, she doesn’t understand my concern. I’m like seriously?? I said he is in a lot of pain, he isn’t getting better at this point, and this isn’t normal. Her suggestion is it’s okay, if it’s nerve related we’ll just put him on medication?!? Seriously??? Hence the reason I’m not messing around with my local GP and I’m going to a specialist.


#14

@Choohooo
To be honest, I have no idea what he got. He doesn’t even know. The spot Isnt near his testicles though. It’s high up in his left top pelvic area by his hip bone. This is where he thought his hernia was as well as the doctors because they could feel a bump or raised spot there. He massages it and it makes it feel better (doesn’t do anything for the burning though).


#15

From grand maul seizure, to suicidal thoughts. I urge caution with all medications. Everyone is different.

Isn’t that the truth. Some have had good results with Cymbalta but I started have suicidal thoughts. Gaba helped me a bit but I had the traditional word finding problems. Amitriptyline was best combo of pain reduction and few side effects for me, but I know others have had issues.


#16

You would think there would be a little more concern and investigation into an issue By doctors if there is a known cause (vasectomy) but not a known cure/treatment. I find this baffling?!? I really don’t want hubby on medication and hope he just gets better but I also want him comfortable. That’s something he needs to choose. I can’t make the decision for him. I’m on here asking questions and gathering info though because he won’t so someone has to advocate for him.


#17

We all find it baffling. Baffling because supposedly educated doctors knowing lie or knowingly choose to ignore evidence that vasectomy is not as safe as published. Baffling that they continue to perform an elective surgery for which there’s really no cure when things go wrong. It took seeing my testosterone history to convince my GP.

I hope you and your husband can find a doctor who gives you hope as well as a plan to get better.


#18

Years of denial by urologists (i.e. it’s in your head, or the vas didn’t cause it), coupled with the fact that it’s hard to imagine how such a small incision and ‘simple snip’ could cause such immense pain, tack on the massive profit for a quick and easy surgery for doctors and the fact that men are stoic and less likely to speak about pain, let alone pain in their genitals, makes for a perfect storm where denial and lack of informed consent and no research into treatment reign freely.