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Various pvp/pvps talk, questions, outcomes, procedures, etc


#21

Think you meant to say you haven’t heard of too many getting worse from reversal, right?

Interesting and unexpected but the anecdotal evidence does seem to favor reversal over denervation. And, yet, from what I know, the reversal surgery occurs in the scrotum (where we all hurt) but denervation is above the scrotum near where a hernia would be repaired.


#22

A couple weeks ago was twenty-six years post vas for me. If only the internet existed then like it does now and i had access to all the meaningful experiences and knowledge that so many on this forum bring to the table. If only…an unhealthy way of thinking for anyone, especially those of us brought together here.
My posts have been few. i know of a few guys here that are somewhere near my fifty-six years of age and time post vas but at least from what i read most are not that far along. All the positive energy i can muster goes to each man suffering that your suffering will end or at least be abated to a manageable level.
Thanks to all that contribute so much technical medical information that even i have used recently in making some decisions about my path. The things i’ve been more involved with are the meta-physical, spirituality, and the amazing capabilities of the human brain.
Besides, i’ve been prepping myself all morning for my meeting with my “health care team” at the Veterans hospital to discuss several important issues (not all pvps). Definitely need to have my Zen centered for that. i started this journey with the VA last October and it has been a well performed theater of the absurd to say the least…which i will…Peace


#23

For those researching varicocele related stuff, I posted some interesting varicocele embolization images, text and such in another thread that may not be so easy to find. In hindsight, I should’ve included the link in my first post in this thread.

Here’s a link to that thread,


#24

@IamHurtin,

Beins you don’t have a dedicated thread of your own going, this is a good open thread to post just about anything related to pvp/s.

Do you mind telling me why you are so sure congestion was the at the root of all your pain prior to your unorthodox reversal?


#25

Hello @RingoStar … I trusted the doctor … Another mistake. I’ve made them all most probably. I’m dyslexic and I cant read gobs of information like some people can. I am somewhat creative and work alot with my hands… But to answer you question it just felt like my testicals were going to explode after I had sex, and if i’d squeese them even a little it was very painful like they were too full already. That is how i came to the conclusion that it was conjestion i had no idea of what else it could be…and the Dr. gave (what he said) me a nerve block and he said that if it helped then i would be a good candidate for a reversal. It helped for about 2 to 4 hours and them i was back on the pain pills. He said i was a good candidate. And a couple of weeks later i was in for the surgery. I feel so stupid and pissed off now. I know. I don’t know alot about my problem. Thats why it is so important that i find a good honest doctor this time and i am asking so many questions on this board. I dont trust surgeons right now and i am very unsure of what to do next. I hope i can find the answer here. This damn "proceedure " has pretty near ruined my life…and thats why i may consider having both the damn things taken out. Sorry about the attitude but if i dont find an answer soon i’m not sure what i’ll do???


#26

@RingoStar…did you have to ask Dr. Marks to take pictures of your operation for you? or does he just do it for everyone that he operates on so he can discuss it later? If so he sounds like the Dr. for me! I have no pictures, no intrest, no compassion from my surgeon (and he seemed like a really careing guy), no nuthin! Really gave my ability to judge people a blow let me tell you! My operation site feels like fingernails on a chalkboard whenever i try to move quickly, my nuts feel like someone is tapping me with a 1/2 inch stick there whenever i try to run or they feel like they are about to get twisted, and i am practically curled into a fetal position after 8 to 12 hours after sex with two raw nerve balloons that feel like they are about to explode if they have one more sperm packed inside. (On a humorous note I realized what i am missing from the orgasm experience recently when watching Dr. Strangelove…and the base was getting attacked by a battalion of US soldiers and Colonel Ripper was telling Peter Sellers …that he denies women his essance because if gave him a “profoundly weak and Empty feeling”)… Thats whats gone for me…i never feel that “relaxing empty feeling”…just more tension and fullnes after orgasam. Maybe more than you wanted to know … But this may be why i sound tense or angry sometimes?
I’ve tried testosterone cream atfter sex and all it does (most of the time) is make me want to have sex sooner…and with this negative type of response 8 to 12 hours after …is there any wonder Why I dont want to engage in sex again? Just more fullness and tenderness. If i didnt have the narcotics to disassociate myself from the pain and the gabapentin to lessen the nerve pain and the advil (to shrink my swolen testicals) I may be a pot head ( but pot doesn’t help much because its and aphrodisiac! ) or worse yet …offing myself !
I wish i had pictures of my operation! I was raised in the worst possible “cult”/religion for dealing with this sort of thing. Christian Science. And although i wasent a practicing CS I was still subjected to the same lack of medical knowledge that most Christian Scientists who are brainwashed with from the begining…that they see doctors as bad …maybe the doctors see it in my eyes…or maybe it’s something i say or the way i act. I dont know…but I have had terrible luck with Surgeons!
i cant handle a lot of strong meds like aleve and any meds that are hard on the stomich (i cant drink alcohol which I,think a lot of men who have PVP use because it lessens sperm production and it kills pain! ) because of an emergency operation i had as a child for Pyloric Stenosis (thats when a child cant keep anything down and they die of dehydration because a muscle in the pyloric Duodenum junction keeps kicking everything out of the stomach…so my mother who had already lost 2 kids broke with Christian Science and threatened the Dr. to save me. He did. With an operation that I understand they give no anesthesia and only curare (the muscle relaxant) so the child doesn’t move during the operation. Nuff said about that …
But that may be why I put surgeons on a pedistal and let them operate on me without me getting all the facts or without me asking for things like …".will you take photographs of my operation, or what do you plan to do exactly, or how many of these have you done and how many of them have been a success for cureing chronic pain…etc , etc.
Now you know my whole mixed up relationship with me and surgeons. Yes I need help! Sorry for the rant. But how did you get the pictures? are they of you? and if so …was it hard to get the surgeon to agree to do them.? I’d like a video of my whole dang operation. Can we ask for…and can we get this…do you know?
Sorry for the rant…but I felt like writing and asking questions because I have got to find a solution …soon!


#27

To the best of my knowledge, Dr Marks gives photos of the sperm/fluid found prior to the procedure to everyone. Same with the pictures of the repairs. It doesn’t cost more either. And yes, the pictures in this thread are of my repairs in 2011.

Once again, sounds like you’ve been through a lot of bs, and I’m sorry this has happened to you.

I’ve never heard that a successful nerve block means you are a good candidate for reversal.

Some surgeons would tell you a successful nerve block means you are a better candidate for de-nervation, but I’m not a big fan of this ideology.

I’m running behind on time at the moment. Give me some time, and I will address your concerns.


#28

First of all, I’m not a doctor. I just know a lot about this stuff via personal experience, and educating myself over the last 7+ years. I’ve been around the block perse, talked w a lot of guys in them years, have read every single post in forums like this one, and in others, have done a lot of homework, etc, etc.

You mentioned you are not great at retaining information quickly, on that note, please take your time in educating yourself before you do anything else. It may take some time to absorb it all, but I’m sure you will get there. What do you have to loose by doing that?

Personally, I’m with you, I think you’ve been messed up worse by your vas to epi reversal. I’m not sure if you ever suffered solely from congestive pvps. Many guys suffer from a mix of both congestion, and neuropathic pain, and/or possibly one, or the the other.

Prior to your reversal, it’s possible you didn’t suffer from pvps period. It’s possible you had another condition such as orchitis, etc. I’m not thinking so, but all other ideas, and conditions should be considered. It’s even possible you were suffering from multiple conditions, including pvp/s.

Far as I’m concerned, your reversal surgeon does not know much about reversals for pvps patients. Perhaps he/she does not know much about pvp, pvps, neuropathic pain, nerve damage, etc. IDK.

How he/she didn’t know a vas to epi reversal is not recommended for PvP/s guys, and is more risky period is beyond me. It makes me think he/she just went with what made partial sense, hasn’t been around the block, hasn’t done their homework, and did it to you. Perhaps you were the first, IDK. I’m not thinking your outcome was intentional.

How do you get out of this mess? That’s gets very complicated, and will likely be trivial. Beyond seeing another pvps doc, here’s some ideas.

Personally, I’m not thinking papaya seed powder therapy will help you, but I think it’s worth a try. You can read all about it in several dedicated threads on this site. From dosage, frequency of doses, for how long, who else has posted about their experience with it, etc. If you take it seriously, it should help you like a tool, or with a partial diagnosis, etc, etc. If you can take the back pressure out of the equation, I think you get where I’m going with this.

There are many tricks, meds, supplements, natural NSAID’s, etc to be read about in many threads here. What works for one, may not work for another.

Some have had good luck with alpha lipoic acid (ALA) for neuropathic pain. I know of several that have had success with it, and you can read all about it with a simple Google search, or even a search here. I recommend you search both places.

I’m not sure what to say, or who to recommend you to. There are several pvps docs mentioned in this forum to consider. Theres even a list of them in a library here.

I’m just going to fall back on what I said in my first paragraph. Educate yourself before you rush into anything, or believe anyone. Try to fully understand what you are getting yourself into before you ever commit to anything surgical again. Nothing is risk free.

There’s so much to be read on this website. Use it to your advantage. That said, you still have a very tricky, and trivial road ahead of you.

If you have any further questions for me, ask away.

Go slow, and good luck.


#29

Rather than edit my post, another thing you should learn more about is, reversal for pain.

There is much more to reversals for pain than helping with congestion. I’ve wrote a lot about it in several threads that are near the top of the list of more current threads.

Reversals for pain are certainly not all about congestion, and that’s why, or IMO a huge part of why vas to epi is a big no no.

From congestion, to damaged vas ends, to sperm granuloma, to scarring, to hemoclips, all are possible sources for pain.

All vas to vas reversals are not created equally. From high end, to low end quality, to what tricks they use to get the job done. This is something to take very seriously.

Some reversal surgeons leave the damaged ends, scarring, and hemoclips intact during their reversals. Some do tricks to pull this off properly, some do not.

As I’ve mentioned in other threads, I am not a fan of leaving all the scarring, and foreign objects within the vas during the procedure, and neither are the majority of top tier pvps docs. This isnt to be confused with the idea that a high end reversal surgeon that knows tricks cannot pull this off successfully.

In how many cases do the hemoclips, and scarring need to be removed? IDK, I’ve never seen any controlled studies to give me any idea.

I’m not thinking all this stuff needs to be removed in all cases, but many do remove everything. One things for certain, if a top tier pvps reversal surgeon removes everything, and it doesn’t help, the idea that anything left behind, or in traped within the vas end’s is out of the question.

Last but not least, while you’re condition, and symptoms do “sound”, or “read as” congestive, that doesn’t mean there isn’t more to it than that.


#30

I’m in Sacramento. You would think that there are some,great surgeons in
and around San Francisco yet the only one that I’ve herd of is Dr.
Turek…and he worries me because he seems to spend an awful lot of time on
TV and his blog AND he doesn’t accept insurance. I thought i sent you this
already… If i did just let me know… I am still digesting all the info
that you sent me via email…i just want you to know that i really
appreciate it…i just wanted to tell you that and ask you …where is this
list of doctors that are sympathetic to PVPS on the boards…sorry if this
is too early but i can see i never sent it …and I’m hoping that you know
someone or that there is someone on yhis list within 100 miles of me. Or
has a second office in Tahoe. I know of one place NOT to go in Nevada
because i read an article where some man shot 2 Urologist’s because of his
outcome. That’s how crazy it makes some men or he was crazy before. I just
don’t want to live another day with this pain. Anyways…thanks for
communicating with me. I appreciate your help. IamHurtin


#31

I am almost sure that I had PVPS but as you say…maybe I didn’t…I don’t know what else it could be ? You are right, the Vas to Epi surgery DID make me WORSE!
But I’ve tried to quit marcotics several times but the pain gets so bad that I end up curled in a fetal position waiting for my narcotics to kick in. Because as you know, you don’t want to use the maximum dose all the time. I have this constant pain for which 5 to 7mg of percoset will handle (thanks to my reversal attempt!)
I’ve tried just NSAIDs (advil, aleve, asprin celabrex and one that Merk got sued for killing a bunch of people ! ) the pain doesn’t go away so I end up taking the narcotics and just having to wait an extra 30 to 45 minutes which by this time seems like an eternity. I have tried just Gabapentin or Lyrica with the same result. It just extends the wait time for pain relief. I have come down drastically in the amount of pain meds i use from 60 mg Oxycontin twice a day and 15 mg of oxycodone 5 times a day to 7 1/2 or 15 mg 3 or 4
times a day. I have digestive problems from an operation when i was a
child so i have used papaya tablets regularly to help with digestive
problems…

  1. is the powder any different than the tablets?
    I think I have read that they are for inflammation and will lower sperm production. Am i right about this?
    As we all know …there are problems with using narcotics …sure! But if they are the only thing that works and you were lied to about the amount of pain that a person can suffer from this “procedure”! How do people fault you for using the only thing that works? This is where I get confused! If i dont use them I end up so tired from fighting the pain…there’s nothing left!
    I tried large doses of Gabapentin but I kept falling and hurting
    myself and then I hurt my shoulder really bad on one fall, I don’t ever
    know if I will ever have full strength in it again. Which is why I would use
    narcotics over Gabapentin. And NSAID’s in large quantities hurt my stomach
    so much i have to go back to using the taboo…narcotic!
    You mentioned that the reversal might have made me worse …and you might be right. I was starting to exercise regularly with testosterone treatment
    before the reversal but nothing short of narcotics would make it stop and I could not have sex without pain! The thing that really bugged me was that I couldn’t get anyone who even believed in PVPS much less spent time with me trying to figure it out. I even went to one guy who said that he had herd this story before and that I would have to just get used to it and I would have to take antidepressants the rest of my life! Without even asking me if I could tolerate antidepressants or even examining me! I had another Urologist try Cipro (which is harsh on my stomach and has been linked to torn tendons…) so then he offered me a Sulfa drug that was mega hard on my stomach and so when I said that i couldn’t tolerate that also he got mad at me and he told me not to come back…he has since died! Not by me!
    Well I’d almost had it at that point. So,i,started doing phone consultations off of the internet! I called Dr. W and paid his phone consultation fee and after the 2nd call he acted like I was bothering him…Then I tried Dr. Turek
    , and he flat out told me that he wouldn’t even talk to anybody who was taking
    narcotics! Thanks doc! Guess why I’m using narcotics!
    I guess some of these urologists don’t really understand how
    much pain can be produced from the testicular area! Weird isn’t it? I mean is almost globally known that it is the most tender area on a mans body. At
    least my pain doctor understands it and he understands that 10 times as many people die from cigarets a year as narcotics and that twice as many people die from alcohol and second hand alchohol related victims. Is that to political ? My doc was fine until the current political climate starting acting like narcotics were a plague.I know I’m not supposed to get political on these boards but I don’t know how else to say it! Yes I know some people can not tolerate narcotics and there should bean economical test. The genetic testing i got was a couple of thousanddollars. Anyway I digress. I am deleting a lot because i guess it was too wordy and graphic for most people. Should i delete the comment about alcohal related deaths? Are they too political? I’ll just say I can’t drink for pain relief because it hutts my stomach and it hurts my head!
    I have had my share of bad luck on this issue…yes! I don’t know what i
    did to deserve all of this. Bad luck i guess. But I am considering the Pure
    clinic if i do anything…
    I guess i have a lot more to learn about this subject…even though I
    couldn’t care less if i ever hear the word testacles, epididimus or scrotal
    pain…ever again. I am totaly frustrated! I understand why some say they just want to give up and end it all…I’ve thought of it!
    It deffinately sounds like i should talk to Dr. Marks, he sounds like at
    least he understands the problem and cares!
    I will spend the weekend trying to read everything on these boards.
    Do you know if anybody has been totally cured?
    Talk to ya all later.

#32

I’m not sure how to go about responding to all of this.

Personally, I would back it down to what’s most important, and into something you would be pleased to read in the future when it’s stuck on here permenantly.

Do that, and I will do my best to address your concerns.


#33

Thanks @RingoStar…thats a good point. I’ve been working on compiters so long i just revert into work mode amount of typing. I’ll work on that.


#34

Yea, I hear you brother. You can easily edit your posts here within a timeframe of approximately 30 days or so.


#35

@RingoStar if you wouldn’t mind…how would I go about editing that down?


#36

There are some icons below your post, and you should be able to find one that looks like a pencil that sits at a 45 degree angle. Click that icon, and the rest is pretty simple.

It’s possible you might have to click the right hand icon that has three dots. Seems it expands into a few different options. Perhaps the “pencil” becomes an option from there.

I’m not thinking you need to be a certain user level to do this, but idk for sure.


#37

Thanks Ringo…I was pretty raged edged when I wrote all that. It is very hard for me reading things about PVPS because I’ve had to constantly argue with the nay sayers let alone living with the pain and the strength sapping tiredness that that pain brings. I have to slow down my reading & learning more than I want because sometimes it brings that pain and loss back into consciousness when I’m trying to ignore it. Do you know what I mean?


#38

Yep, I know all to well.

Take things one day at a time, one hour at a time, one minute at a time, etc. I’m glad you found this place, but you are correct, spending to much time here can be unhealthy.


#39

I’m not sure how much help Dr Marks will be in your case, but he might be worth talking to. I feel confident telling you that your case is well beyond ICVR’s abilities.

Dr Marks is a wealth of knowledge, but I don’t see him fixing you. ICVR is a reversal centre only (far as corrective procedures go), and you certainly don’t need a reversal.

Far as do I know of men that have been totally cured? I know of few. The vast majority of stories I know of, men are not completely pain free after treatment. That’s not to be confused with they are not out there, because I certainly don’t know everyone, nor everything.

Pain free from where your at? You only have so many options left. I think it’s possible you could be cured, or at least improved, but I’m not sure how you will get there. Your surgical options are few, and carry the risk of making you worse. I certainly won’t recommend a procedure.

De-nervation scares the crap out of me. I know of too many that have been made much worse by the procedure. That’s not to be confused with I don’t know of anyone, or any stories where it didn’t help.

If de-nervation doesn’t help, or makes you worse, I believe orchiectomy has a far greater chance of not eliminating your pain. From cord stripping, to neurolysis, de-nervation is more nerve damage, plain and simple.

Hope this helps


#40

I’m going to add to what @RingoStar said. I think the goal is not necessarily compete pain relief. Sadly I think it’s unrealistic that many of us will get compete pain relief. Originally no pain was my goal. My current goal has become different after I read this website, talked to family and friends, and discussed options with physicians. I currently want to get to a point where I accept the pain as a new norm and hope that it gets to a point where it doesn’t consume me. Basically, turn it in to background noise. Billions of people have to do this on a daily basis, so I know I’m not alone. Its frustrating but it’s reality. It also helps to focus on the positives because my life could be far worse than it is now, and for that I am grateful.