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


#41

So are you guys saying that cureing this pain is a total roll of the dice and almost impossible ? Wow! they really lied to us “big time”! I feel like such a moron! I remember distinctly being told that if i didn’t like it i could get it reversed! And was never told that the statistics were 1 to 2% would have constant pain. I really find it hard to inderstand that there has never been a class action about this issue. With those odds the most i would even gamble is $1000.00! (May be!). I think I want to talk to Dr. Marks or someone like him so I know that HE knows what he is looking at when he looks at my last Ultra Sound or MRI. The urologists that I have met arround here seem to just look at it and say …you’re just fine! I feel like yelling at them and saying “what do you mean I’m just fine? Are you crazy? I’ve had a double vaso-epi “otomy” (or whatever!) what are you looking at?” I mean I can not find ONE urologist to show some compassion and act like an adult about this issue!
I guess what I’m looking for then is someone who will give my records a thorough look and then give me an honest answer if he can fix me or not!
This is most likly a dumb question but why would having both of the testacles removed be so bad a procedure? Women have their ovaries out all of the time. Is it because there is a lot more veins, arteries and nerves that would need to be severed (cut or burned) when they take them out? Obviously I should have taken anatomy in college but really … What is the main issue in an orchiectomy (most likely spelt wrong)?


#42

You probably don’t want to hear this, but yes, that’s exactly it, a roll of the dice.

When I went to see Dr. Jarvi in Toronto (he’s arguably one of the best PVPS uro’s in the world) he literally told me that they don’t know for sure what causes the pain and that I would have to ‘roll the dice and see what happens.’

There have certainly been a few guys that report being 100% better after surgery, but it’s not the norm.

I remember wondering why there hasn’t been a bunch of lawsuits over PVPS, but the sad fact is that medical malpractice lawsuits are really tricky. You basically have to die because a doctor seriously screwed up and failed to provide the ‘standard of care.’ Doctors know when they screw up, so they go into defense mode. Everything from their surgical notes to covering their asses by having their colleagues stick up for them and so on. Kind of like the stuff we’ve seen when cops screw up and their boys in blue come to their rescue. (I’m not trying to bash on LEO’s here, but there are some bad apples out there for sure).

A class action lawsuit can’t and won’t happen because there would be thousands of defendants. Who would you sue? It’s not one big machine, company or doctor that’s messing us up, it’s just a bunch of doctors with a cash cow procedure that failed to inform of the risks. Some docs haven’t done enough vasectomies to have a patient in chronic pain, but most have. Remember, pain is not death, so to doctors, we all had successful procedures. Treatment for chronic pain is an unmet need in healthcare, and chronic pain is not considered a health risk. If you had a hernia repaired today, you wouldn’t be told that there was about a 10% chance of chronic pain from the hernia repair, with some being debilitated. It’s not just limited to vasectomies and hernia repairs, chronic post-surgical pain can occur with almost any surgery, you just don’t hear about it.

I think doctors also don’t like to admit or warn of chronic pain from surgeries because it implies fault or liability and leaves them open to being sued. It’s like admitting they did something wrong.

Anyways, getting back to your situation, it sucks that you’ve been at it this long, and it really blows that you got worse from a vas-epi reversal. Personally, I don’t think that doctor screwed up or was trying to take your money, but I think he just didn’t know. A lot of docs have no idea about PVPS let alone how to treat it. Yet it’s shockingly common.

You can consult with Dr. Marks, although I’m not sure what you’re trying to accomplish. He’s a great doc, but he only does reversals. That’s it. He can review your ultrasound and MRI all you want, but at the end of the day, EVERY man with a vasectomy will show swollen epi’s regardless of whether they have pain or not. It’s actually amazing that more men don’t have pain. Everything on the MRI will look normal too, because it can’t show any nerve damage, probably won’t show any scar tissue, etc.

As to having a double orchiectomy, well that’s an extreme option for sure and you’d need to replace your testosterone for the rest of your life afterwards.

At this point, the only real surgeries left are:

  1. Epididymectomy (removal of the epididymis - this surgery has only helped like ONE guy on the forum and made a few worse)

  2. Orchiectomy (inguinal removal only as scrotal removal has like a 50% success rate)

  3. Spermatic cord denervation (has helped a few guys here, has made quite a few worse and has done nothing for some).

It’s a crappy situation for sure, and all we really have is to roll the dice with surgeries and hope for the best.

You really need to find a urologist who treats PVPS. There’s a directory somewhere on this site. I wish important threads like that were stickied.

One question I have for you, is your pain strictly testicular/scrotal or is there pain up the cords, into your stomach etc?


#43

@vasregret…well thats a bummer. What can i say but when you do something
stupid it can stay with you forever. I have this pain that feels like it is
overly full most of the time. But sometimes it feels like my testicals have
been through a blender which is the new pain because the surgeon attached the vas directly to my Epididimus…It feels like there are multiple cuts that have
scar tissue and they rub on nerves whenever i try to move a lot. And no its
not just my testicals. Like I said my Epididimus is worse and my vas feels like it is swollen and full and ithurts up to the canals that they originally dropped from. Also i have painsometimes all the way to the bottom of my stomach. I really wish i wouldnthave done the reversal now. But I tried and I lost. I usually don’t like togamble but I had hoped that I wasn’t gambling. Thanks for your reply. All Iwanted to do was save my wife some pain. I guess what they say is
right…nice guys finish last …or ya gotta do what’s right for you first
and foremost. If they come down hard on the opiates and take them all away
… I won’t have much choice…so I’m trying to figure out my options.
Regretfully there aren’t many.


#44

@IamHurtin, it doesn’t seem you ever had any follow-up with your reversal far as finding out if it was a success far as return of sperm. Is that the case?

I’m having a hard time understanding why this reversal was recommended / performed on you, and no follow-up on your numbers?

I’ve seen plenty of guys never follow up with an SA (semen analysis) to find out if their reversals were even successful. I don’t understand why in them cases either.


#45

@IamHurtin I feel your pain man. I mean I literally feel some of the same pains you are talking about. I think we may be in a similar situation. When I tried to talk to the urologist who did my vasectomy I got the standard ‘this is very unusual, take ibuprophen, give it time, it will go away’. well, guess what? It didn’t go away, it has been almost a year for me. After 9 months that Dr. literally said ‘I don’t know what to tell you, my friend’. OK, thanks doc. My epididymis is very sore on both sides, sounds like the same for you. To me this is a pretty clear sign of congestion. it isn’t at the same place where the surgery was done, it is upstream from there, due to the backup and pressure buildup from the sperm with nowhere to go. I talked with Dr. Marks yesterday, he has given me hope that a reversal can help.

Another thing, you said you are in Saramento: there is a Dr. in Oakland at Kaiser, Dr. Wayland Hsiao. I talked with him on the phone, he knows about PVPS and seemed like a smart guy. He is at Kaiser in Oakland. Dr. Marks knows him as well and said he is a good Dr. and would be good to talk with. Dr. marks mentioned a few other PVPS Drs in the bay area: Karpman, Nudell, and Turek (he seems pricey) I have an office visit with Dr. Hsiao on Monday, I’m hoping he can help me get some financial support from kaiser on this, I’m pretty convinced reversal is the solution for me… He might be someone you could try to see, at least he has some idea what is going on with us. Personally I think I may go with Dr. Marks for the surgery b/c he has a lot of experience and an impressive success rate. He said he has done around 6,000 reversals, about 600 for pain patients. He said 90-95% of the pain patients had the pain go away or go to a low enough level that they could get on with life. Sounds pretty good to me. I think the tricky part is being sure you have congestion, where a reversal would probably help, and not something else.


#46

@ringostar…since you wrote this i have been trying to set up an appointment to do just that. But i didnt care what my numbers were …I just wanted to be out of pain. But i can see what you are saying is important! Him not asking for them and not taking any pictures is really making me feel like i chose the wrong dr.


#47

@ringostar i agree! This is the reason i am so concerned about letting anyone do any operation to me. He seemed so friendly & so concerned. He had the right position (head of U.D. Urology), recomended by the top doctor that did prostate surgeries in the area. And he had worked on me so long and looked so frazzeled after the surgery i thought that he had done the best he could and was tired. I called a couple of times and he gave me various things to do then the third or 4th time i called he said that i was probably just too sensitive and it should have worked. He recomended i come in but After that i just didnt want to see him anymore.

I’m thinking of starting a thread about what their surgeon said was the reason that their surgeries did not work were. Because my urologist said that my epididimus and vas were just so stuffed with old dead sperm that he had to do a vas to epi operation. I asked if he tried to clean the dead sperm out and he just said …you can’t! What? If i had any idea he was going to do two vas to epi reconnections i wouldn’t have done it. It almost seems like i was an experiment because the admission of PVPS had recently come out…he thought he might get some practice in?

Someone had mentioned if they had ever been told certain things before surgery…but i was certainly never told that there was a possability of having testacles, epididimi and an old tied off vasdeferens filled up with old dead sperm and it couldn’t be removed. I would have remembered that. He did non of the more professional things that you told me that Dr. marks does.


#48

@KevinL …you know it is really painful trying to remember fealings and what to say regarding pain or pain fix failiers. it is strangely exhausting. I have had a reversal and it made me worse! But, i did NOT go to a reversal/PVPS specialist! i went with a reconnection specialist. If I had known what i know now i would have gone with a PVPS specialist that had the most successes for people from this board.
The funny thing is that when i asked my surgeon if i could talk to someone that he had corrected…he hooked me up with a guy that said that the main surgeon had been a woman from Kaiser and my doctor had assisted. Sometimes i feel like i do the dumbest things when trying to fix this thing! That should have put up a warning light right there!
I hope I can get Dr. Marks and Dr. P and a couple of others to give me some input on what they think that I should do from here. And I have got to get my insurance to pay for this one because they wouldn’t pay for the reconnect. Let me know how things go for you. Good luck.


#49

@IamHurtin, Having thought about your case a bit, the first thing that stood out about your story is how long you had been vasectomized.

I don’t recall much detail about what life was like before your vas to epi reversal, but afterward, you say you are significantly worse than before.

I don’t see how any reversal surgeon could achieve fertility for a long duration that would actually help clear things out very well 15-20+ years down the road vasectomized.

20+ years down the road, your lower vas, and especially your epididymis’s should be very damaged by then. The scarring, clogging, etc, etc is not repairable. It cannot be “cleaned out”, and made functional again.

I don’t come across many stories of guy’s that had a vas to vas reversal for pain that are 20+ years down the road either.

Don’t get me wrong, I have seen at least one, and their numbers were poor, like 5~ million, and dropping shortly afterwards. Seems they got partial relief, and quit posting 9-12 months into their recovery. IDK how that guy is doing currently, that was years ago.

Generally speaking, when I read stories of “pain free guys” that had a reversal for fertility 20+ years down the road, it’s going to be vas to epi, and the window to get their partner pregnant is generally much narrower, if the reversal is even a success.

I’m not seeing where any surgeon would know the status /condition of your vas’s, epididymis’s, fluid, scarring, etc until they crack you open, and visually see, and inspect what needs to be done. All at the same time, if a man is 20+ years down the road, an experienced reversal surgeon has a good idea what to expect to find IMO.

Just FYI, there is another story on here about a guy that never had any pain way down the road, had a vas to epi reversal for fertility, and ended up with severe pvp/s.

On a final note, it’s hard to say why there was never a follow-up with a semen analysis / count (SA). You said you made several follow-up visits, but no SA. Considering your description of your symptoms, I’m shocked you never insisted on the testing. All same time, I’m shocked your surgeon didn’t either.

I don’t see how getting an SA done now could hurt other than financially, but I have my bet on you are very scared over by now, assuming you were ever fertile in the first place.


#50

Hello @RingoStar…did the real Ringo have PVP problems? Thats what we need are some big stars coming forward and complaining about this. Then maybe we’d get some action. But i understand your confusion with my case. I am confused also. I had gone to this surgeon because the other 3 or so that i had talked to had been so rude to me that i gave up talking to any surgeons for about 2 or 3 years about 6 years ago. And my life was so painful and i had so little energy that a long distance patient to doctor relationship with a doctor in florida (Dr. P) was just too much to consider because i had a very bad episode with going just 100 miles out of town for a different surgery. And the doctos that i spoke with in S.F. and L.A. just didn’t give me any warm and fuzzy feelings either. I just decuded to try to live my life dealing with the pain using meds. Then my wife went thru a particularly frisky period and the pain was just getting worse and worse about 6 to 10 hours after orgasm, that i felt for sure that it was congestion and there was just no more room for replacement sperm. Using testosterone cream on me didn’t seem to help at all …it just seemed to make me more sexual. And the cycle would just get worse and worse. I wondered if i could ever get that good feeling back so i went to a nice doctor with the best credentials that i could find. When he “cracked me open” he saw that i was so conjested with old dead sperm that had not been reclaimed like the guy that sold me on the vasectomy had said that they would. That’s one of their favorite lines isn’t it? I mean they always tell people that "your system will just reclaim the sperm " when they are selling you on the Vasectomy idea don’t they? I don’t think my system ever stopped producing sperm and i never experienced anything like hypo gonadism where they got smaller because there was not enough testosterone to make sperm either. they just felt like they were getting fuller and fuller…that the pain started traveling down my vas to a point that they became hard and swollen. I just wanted to have an exit for the little buggers because i had come to the realization that a vasectomy was a bloody stupid idea to begin with…very possibly the dumbest thing that i had ever done in my life (and i’d done some whoppers) …over the years i had come to realize that making a Dam where there never was supposed to be one …was a damn stupid idea…at least .for me it was! Maybe it’s great for some guys and god bless them…but i should have realized that it was a stupid idea for me! Because i was very sexual…at one time! Heck i played in a rock band…and thats half of the reason that you got in a rock band …was for the girls! Wasnt it? Was for me! Ha! But sick of pain and pain killers one week i just closed my eyes, put my money down…and prayed! Well my prayers were unanswered. And thats why i don’t go back for a sperm count…because all i cared about was the pain to be gone…but it wasen’t…and here i am! I had put my faith that the Urologist who was telling me that he thought that he could fix me , was telling me the truth, and i was praying that he could. Well he couldn’t or didn’t. And I’m Still screwed after all these years!


#51

I am hurtin, at the risk of sounding like a moderator or grammar nazi, I think it would really help the other participants on this board if you’d break your long posts up into paragraphs or even multiple posts. The post above has 30 lines of text without a break. I don’t even read posts written like this, and I suspect others will brush by as well. Please know I’m not criticizing, just trying to be helpful and keep this forum useful.


#52

Yes, urologists do tell men that at pre vasectomy consultations. I actually posted my pre vas paperwork, and my informed consent paperwork to this forum. It says exactly that.

As many of us have learned the hard way, what urologists are telling/selling men isn’t quite so truthful.

It’s a known fact that men that had a vasectomy have enlarged epididymis’s. That wasn’t in our paperwork either, or at least not in mine.

The damage that is done over time to our organs such as our epididymis’s was not in our pre vas paperwork either. I’d say the mass majority of vasectomy consultations, and paperwork are quite misleading to say the least.

So much for the man’s body will “absorb and recycle your sperm just like it did pre vas”. That’s a very misleading statement, and is bunk far as I am concerned.

PS: I have no idea about the “real” Ringo Star question. It’s just my username. I would’ve uploaded a picture of some drums if I was - haha.


#53

@raising4girls i know you are right…i will try…i apoligize. But i am at this inflection point where i have to do something and i guess my mind is raceing. Again i was in such pain last night i guess i used the post to pass the time…it was wrong…i can see that now…i’ll edit it.


#54

@raising4girls i thought when a person used the @ sign it went privately to the user. I’m a bit confused how this works…Ringo had asked me a specific question and I thought it was going to just him. Do you know how to just answer the person that asked a specific question so it doesnt take up so much room on these boards?


#55

that just tags them in the post. You have to send them a message if you want it to be private.


#56

I totally understand. I thought you were a bit new and wanted to be sure you knew everyone is here to help and wanted to be sure your posts don’t get ignored.


#57

@IamHurtin Sorry you have had such a sh*ty run, that totally sucks! I am going to talk with Dr. Hsiao (Kaiser Oakland) today, but stories like yours make me SO nervous! I am convinced reversal is my best option, that this isn’t going away with time, but I know things can still go wrong with another surgery like it did for you. All of this makes me feel like I can’t take any chances, i should just pay whatever it takes out of pocket, travel to AZ, all of that, so I know I got the best possible surgeon. If it doesn’t work out with Dr. Marks as the surgeon, no regrets, I think he is the best I can get. If I go through Kaiser and I am not fixed or worse after reversal, I’m going to have some serious regrets. I will be pissed at myself! Maybe Dr. Hsiao will change my mind this afternoon, I’ll post an update. I think the key questions are: how many reversals have you done, what is your success rate (fertility), how many PVPS patients have you treated, how many reversals for PVPS, what is your success rate for pain relief after reversal? I know the answers from Dr. Marks, I doubt most uros have numbers even close to his when it comes to PVPS.


#58

@KevinL please don’t let me make you more nervous because I screwed up and now I’m nervous. I’ve herd that Dr. P is very good, a hell of a lot more serious about the causes and realities of PVP than the Dr. that I went to. He also has a million dollar plus machine called a daVinci that has “zero” shake or wobble when working on delicate bits, and it has 5 hands or more to get in close! Have you seen their stock…ISRG (i wish i knew more about this machine a long time ago) it must be a very good machine! I once had someone rationalize to me (against the machine) that maybe they need a robot because they may not be any good…at the operation. The doctor who did a rotten job on me! ) . Dr. P is at the top of my list until I learn differently. I still haven’t talked to Dr. Marks…although i have called twice and filled out a form that i would like to talk to him…but he’s most likely very busy. That doesn’t mean that I’ve decided. I may end up going to the best (testical remover for cancer) that I can find; but I need a diagnosis first! And i need to find out if there aren’t other things that i can try first like… accupuncture, nerve block, steroid treatment,etc etc. Thanks for keeping us up to date on your journey & good luck! P.S. You can visit Disney Land or Universal before your operation in Orlando and relax on the beach a short distance away as you recover if you go with Dr. P (at least thats the one my kids think i should choose! Ha. i may schedule it near a rocket launch…i’ve always wanted to see one and it has some interesting Freudian or Jungian symbolism …don’t ya think? Ha!)


#59

I just reread that you are near Oakland. If you speek with or interview with any of the ones in S.F. please let me know what you think of them. I sure would appreciate it. I remember interviewing with two of them and one was very economical with the conversation and the other one blamed me for using pain killers, and didn’t give me a reason why. I felt like asking him…do all of your clients not feel pain or are they named Clark Kent? “You do know that this is a very nerve filled area dont you?” I was confusd with both of their attitudes.


#60

Just met with Dr. Wayland Hsiao in Oakland today. He was nice enough, and definitely believes in PVPS, knows various surgical treatments etc. He came across as a smart thoughtful guy, and Dr. marks said he was good, so take that for what it is worth. He did an exam and confirmed what I knew, epididymis sore in spots, a little sore at the vasectomy site. He said for me there are a few surgical options, and they all have ~70% success rate. But its hard to say what will work for each person because PVPS could have different causes and one thing doesn’t cure every possible problem. It sounds like the most common thing in my situation is a re-do, which to me says the first guy screwed up. They just repeat the same thing, clean up the ends and close them up again. Other version of that is an open-ended re-do, so one end is left open to relieve pressure. I asked about reversal and he said he would be happy to do that for me if I want. Sounds like he also does denervation, but didn’t recommend that for me. Overall it seemed basically he wasn’t sure what the root cause was, that there are different theoreys and situations. It was a bit like a menu of surgical options that I could choose from. a little weird. anyway, I was already pretty sure I wanted a reversal and he didn’t dissuade me from that. He said if I wanted to go with Dr Marks he was good and he supported that. For myself I just feel like I want the best and I think Dr marks is the best. I think Dr Hsiao knows a lot, does ~50 reversals a year and sees a handful of pain patients each year. He said he has had 1 patient he did a vasectomy on who ended up with PVPS. He is at least worth talking with if you want the opinion of a smart Dr.

As far as Kaiser, the impression I got is he would do whatever surgery I want, Kaiser would cover it. But if I go to ICVR, it doesn’t sound like it would be covered at all. Too bad, but I can’t let the money and/or hassle influence my decision on this one.