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Epididymitis or Congestive Pain


#82

Interesting post @choohooo. I have a strong hunch that you are on to something very real. I feel so strongly about it, I could write a lengthy post about it far as how I can relate, and what I suspect may be happening to some other people as well. That includes people I’ve read about, and/or talked to for nearly a decade.

Chronic stress has been said to be a killer since I started reading pvps forums in 2010. That means it’s said to make it worse for many. I just took a lengthy leave of absence, some would call it a vacation, and I was nearly pain free far as my pvp/s symptoms go pretty much the entire time. I got back to my day in day out life, and on occasion I can feel things trying to ramp up again.

Sometimes I wonder if my initial “nerve damage of sorts” didn’t leave me with some sort of phantom pain as a byproduct (beyond some sort of true nerve damage, and other complications). I didn’t start to suspect some of my lingering issue could be just that until about 1-2~ years ago. That would take a long post and/or explanation with details to convey to others in text what I’m talking about.

I’ve actually considered starting a thread on who experiences anything they suspect is, and/or partially is phantom pain (or something like it), but never have. I really didn’t want to imply that anyone’s pain was in their heads, and that’s why I never started the thread.


#83

Yea, me too. I can’t say one way or another what happened to me way back in my early days far as absolute certainty tho. Your theory sounds very plausible to me. Perhaps I suffered from both, idk.

Well done.


#84

Interesting article from one of the well know pvps specialist I like how he quotes up to 15%
https://www.theturekclinic.com/post-vasectomy-pain-syndrome/
I just wish I knew what category I feel under. I think I might of hit the jackpot on 3 of them epididmitis neuro and congestion. My pvps doc stated epididmitis am thinking congestion as well just based on the location of my incisions. Left incision is lower than right and of course left is where my issues are. All this over analysis and 2nd thought just adds to your overall mental struggles this shit is crazy…


#85

@NC79 Well spoken article. He doesn’t give a reference to 15% so I’ve included that below. It’s been proven not once but in two different research papers.

“Chronic scrotal pain after vasectomy is more common than previously described, affecting almost one in seven patients.” ~British Journal of Urology Int’l 2004

“At 7 months after vasectomy about 15% of previously asymptomatic men have scrotal discomfort.” ~British Journal of Urology Int’l 2007


#86

@RingoStar Stress is HUGE. What else does PTSD and fibromyalgia have in common? I have a patient that developed FM/CFS 6 months after moving her mother in law (w/ dementia) into her home. I’ve had two cortisol stimulation tests, one of which was at Mayo. The first showed secondary adrenal insuffiency and the second was low cortisol but not enough to confirm the first diagnosis. Stress isn’t just being stress out. Stress, especially the type we are dealing with, ruins your body. It also screws with your sleep pattern which IMO is the final straw. A lack of REM (which ive already tested positive for) will alter your glymphatic function in your CSF and suddenly you’re hosed. All this and I haven’t even mentioned posture.

I could go on for hours. My diagnosis of pseudotumor cerebri was what open my eyes. Medicine doesn’t understand CSF pressure in the slightest — but chiropractors do. As a western trained health provider, I struggled to wrap my brain around it w/ chiro (sorry Aschiro!) but I’ve seen the light. You look at Scott Rosa DC and his cervical research on cervical CSF flow and what he was able to do for Jim McMahon. Neck pain is another HUGE common denominator with all this. Tweak the posture, neck suffer, flows altered. Done.

My injury is so unique and so deep. The more I test. The more I hurt. The more I research. There’s only so many shoes that fit. Another interesting tidbit, both Alzheimer’s and PPA/FTD are said to develop from altered CSF flow. Sandra Weintraub is the first person that comes to mind on that one.

Try convincing medicine of any of this stuff and you’ll get laughed out of the room. Maybe in 50 years they’ll finally figure it out.


#87

Yea, it’s all very interesting @Choohooo. I considered deleting my previous two posts, but will leave them. I’d really hate to be ridiculed over anything I said in them. I just spoke what came to mind at the moment.

I’m not sure what’s going on, and given the flack we’ve received from at least one member on this site regarding supposedly misleading people, using scare tactics, basically calling many of us paranoid, delusional, idiopathic, etc’s, I can’t endorse, agree with, or take this conversion a whole lot further without feeling a bit uncomfortable. I don’t want anyone to think that I think this is happening to everyone, or that I think it’s certainly happening to anyone.

Your ideas are appreciated by me, and that’s why I gave a post of your from earlier today a like. After all, you are my most liked member on this site, ha! I consider your ideas, thoughts, etc to be new school, thinking outside the box, well researched, etc, and I do appreciate everything I’ve ever learned from you.

This thread certainly is way beyond its title, lol.

Good luck all.


#89

Thanks for all the insight her. I think choohooo is right that most of us would be laughed out of the room for some of the analysis and projections here, but I sincerely believe they’re spot on. I was “lucky” enough not to get the full truckload of central nervous system ailments as part of my PVPS. Even back in the Yahoo forum days, I described my version as “lite” and localized as I’ve never had pain so bad that I had to stay in bed, miss work, or resort to opioids. But, come October, I will reach the 13th anniversary of my first onset of pain…do I get a badge or watch?

I learned here that my lower back problems that resulted in L5/S1 fusion in 2012 are likely due to the pelvic floor dysfunction and nerve damage caused by the vasectomy. No one outside this forum will make that leap except for maybe my PT. But, the nervous system connections you’ve all drawn are IMO spot on.

I’m not ready to rule out the autoimmune effect. I still contend my low T and high PSA back in 2005-06 pre-reversal were autoimmune related, not CNS-related.

Sorry for the rambling. I sincerely appreciate the education I’ve received here and want to thank the contributors.


#90

@RingoStar Such an honor! When @raising4girls gets his 13 year watch, I’ll get a plaque!! I personally refuse to shut my mouth. I’m not here to frighten anyone but rather shed light on a VERY COMMON issue. Sure it doesn’t happen to everyone… but ONE IN SEVEN is too damn high to go down without a fight. I’m not done. Not even close. Once I quit working you’ll probably see a billboard campaign or something. After all, FM/CFS was nothing more than a mental disorder 5-6 years ago. Now that’s shown to be false.

Until doctors are willing to search outside their outdated textbooks for answers, medicine will never progress.


#91

another entry in my jounral, as of today and last week and half my scrotal/testicle pains have been very mild which is amazing physically and mentally (not on any meds)… but my leg pain hasn’t changed. I was off for a week and things were good but now back to work and sitting alot makes things worse, now i know why they say sitting is the new smoking disease. I have any appointment with my Uro tomorrow going to push for a nerve block to see if that can pin point nerve related vs musculature. I know i have tight adductor/hamstrings but PT doesn’t seem to help. Any thoughts or suggestions for refferred leg/groin pain. Tried PT/Accupunture/Pelvic Therapy all no success.


#92

Went to go see my Uro today for follow up visit.

  1. Says my epi is getting better but still tender but better than before, no granuloma felt or found either.
  2. Says my issue is most likely congestion related and if by 9 months post VAS not better then look at surgery
    Either convert to open ended or full reversal. He thinks open ended is a less intrusive
    approach, but if am going under the knife again am going with reversal. He says 75-80% success rate with
    reversal. Am going to give it a 1yr before any type of surgery.
  3. Going on another round of nortrypline for 2 months to hopefully help me
  4. Follow up visit in about 2 months if not better will do a nerve block as well
    Dr doesn’t think nerve block will help because my issue is mostly epi/congestion related but worth trying
  5. If nerve blocks help then options are botox injections or micro denervation. But if i have to go under the
    knife again its for a reversal
  6. The leg related pain he feels is secondary to my vasectomy either can be nerve related or simply referred
    pain from EPI. He thinks that nerve blocks won’t help with leg issues but still worth doing.

#93

Throwing this question out to all any input and thoughts is always appreciated; Open Ended Vas conversion vs Reversal.

My PVPS specialist said next steps including surgical would be Open Ended conversion or Reversal. He feels my pains are mostly congestion related. Thoughts @SomeGreyBIoke @RingoStar @Choohooo @Acschiro @MikeO @raising4girls @Kyvas @Krz673804 @Ben @Loz
I know the decisions is totally mine but am a systematic person very engineer like and my gut is telling me reversal over open ended.


#94

From personal experience, open ended was terrible for me. I had so many auto immune issues; alopecia area ta, psoriasis, my toe nail came off, not sure if there were other issues that I am not aware off. I came to a conclusion that if my nut sack is going to be cut again, it probably will be reversal.


#95

Hard to say what you should do @NC79. Anyone that reads many of my posts knows I’d choose a bilateral reversal over an open ended conversation. I have several reasons for why I’d do things that way, and some of them are spot on with your thoughts. My views aren’t to be confused with my thoughts are best for everyone else as there is no one path for every man with pvp, pvps, etc. I want you to do what’s best for you, not for me.

Remember to always exhaust conservative options first. By doing so, you will never have any regrets regarding your decision to move in any direction you choose.

There are several guys on this site that kept waiting things out, only to regret not having a reversal sooner. Again, hard to say where you fit in. Only you would know that.

I certainly won’t advocate that you, or anyone else wait this out for many years as I could be leading you into another disaster waiting in the wings of fate.

Good luck with whatever you decide to do.


#96

Open ended conversion is like a poor mans pressure release. Theoretically it should work. The nice thing about open ended conversion is it’s quick, less invasive, less expensive. One thing I would ask the urologist is how easy it is to go from a vasectomy, to open ended, to reversal. If they are clipping the ends of the vas for the open ended, then they have to go back and clean up the ends for a reversal, you might not have enough length in the vas deferens to do both. Don’t quote me on that but it may not have the option of reversing later if it doesn’t work out like it’s supposed to.


#97

Reversal. I’m of the opinion that surgery is best avoided so skipping straight to the surgery that seems to be the most researched and effective would be my choice. I would be worried the open ended wouldn’t work, and then would have to have a 3rd incision in the scrotum which means more scar tissue, lessened chance of success and higher risks of injury. It’s a difficult choice man. Good luck.


#98

Also @NC79, in regard to my quote above, obviously there are guys that regretted not waiting longer, and wish they never had a reversal so soon, or not all all. Results certainly vary man to man on all levels accross the board on this site, and in real life period.

Thought I’d share this last thought as I’d hate to come off as bias, misinforming you, or anything of the sorts.


#99

If you’ve made your mind up to proceed w surgery then I would go with reversal only w a specialist who does reversals for PVPS because microscope is being used to ensure less damage to cord and nerves.


#100

@NC79 I haven’t considered open ended or researched it much considering my issues don’t seem to be pressure related. I consider reversal daily which seems to be next step for me if time and conservative treatments don’t work. I have been having better days lately so hopeful things are starting to improve slowly which I will ride out if it continues. If not I will schedule reversal. Good luck with your decision


#101

Thanks @Choohooo for those good questions and all make sense. I asked him what is the success rate of open ended conversion and he flat out told me he couldn’t give me a percentage because it’s not practice enough where as reversal he says his clinic is trending a 75-80% successful rate in pain reduction for those who are diagnosed with congestion based symptoms and pains.


#102

Thanks all for the quick and informative responses much appreciated. Am going to continue pursuing conservative treatments before heading down surgical path like i keep telling myself give it 1 yr before and reassess surgical options. I hope i don’t have to make that decision but time will only tell and how am trending. I know ultimately i need to trust my gut and weight out all the pro’s and con’s. It’s a decision i wish no man would have to make but this is the situation we face. Will reassess after my nerve blocks, if i did go with reversal it would be microscopic.