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Curious if Octiectomy has worked for anyone


#21

No worries thank you for your thoughts.


#23

I saw that your post was withdrawn but hopefully I can answer a few questions. Pain during ejaculation is a sign of back-up/congestive pain but is by no means the only symptom.

I’ve had urologists tell me both - that it was a sign of congestive pain and that it had nothing to do with congestive pain. A lot of the confusion is due to lack of information in the medical community.

You describe a constant dull ache behind your left testicle and that the epi is painful to the touch. That’s probably because your epi is inflamed due to trying to deal with the increased pressure/congestion/back-up of sperm.

Since the pain seems to have settled in that one spot I would say the doctor who told you otherwise is wrong. It’s probably a back-up of sperm aka congestion causing or at least greatly contributing to your pain.

I think the guys who have obvious pain with ejaculation are easy for him to diagnose. There are many reasons why you could have the constant dull ache and heavy feeling and not have pain with ejaculation.

I’m beginning to think that ultrasounds do more harm than good for pvps patients. Don’t see an abnormality? Then there must not be anything wrong. When in reality an ultrasound isn’t going to show if you are experiencing pain due to pressure. You are more likely to see a swollen and distended epi on a patient 10 to 20 years out from a vasectomy, not a few weeks or months.

So while your epi is screaming at you about the increased pressure from the backup of sperm it won’t show on an ultrasound because the pressure increase is too new and your epi is still able to contain it without showing any visible symptoms.

Without anything ‘obvious’ on an ultrasound most urologists will just shake their heads. Modern medicine is screwy like that. A lot of doctors want something to point at so they can say ‘this is why I…’. I suppose you can thank insurance companies and lawyers for that.

Some people have had good luck with gabapentin and nerve pain. It didn’t help the pain that I had that I attributed to congestion at all. Even when the ‘nerve’ pain subsided the congestive pain was still there no matter what does of gabapentin I was on. That was my experience and one more thing that makes me think that there is a congestive/back-up component to your pain.

I’m not a doctor, that’s just my 2 cents. I hope that helps. If we can answer any questions just let us know.


#24

Your two cents are very welcome Radar, thank you. It looks like you had neuropathic pain also that
went away at some point, maybe after your denervation, but the congestive pain remained. I was wondering why you went for the orchiectomy before trying testosterone injections, a conversion to an open ended vas or a vas reversal? If the pain is caused by too much sperm production there might have been a good chance that one of the above options would have helped. I learned about the risks associated with the open ended vas and the vas reversal but I didn’t hear anyone mentioning any side effects for the testosterone treatment.

I’m not sure how other peoples vas went down but with mine the doc took a big chunk out of the vas deferens. Is a reversal even possible under this circumstances? Can the remaining ends be stretched somehow?

Can the pain be also caused by varicoceles? I read in wikipedia that some symptoms overlap with the ones from pvps. Can varicoceles be caused by postoperative hemorrhage and hematoma or does it take much longer then a few weeks to form?

To be fully disclosed with the pain during ejaculation, I experienced it about twice, from which one time was excruciating( like 10), longer than 6 months after the vas. Have never experienced anything as bad before but it never came back after that. The pain now tends to come or increase in intensity several hours after the sex/ejaculation.

I noticed recently that some mornings the pain is not really there or is at a 1 and it usually increases significantly by the evening( up to a 5-6 sometimes). So sleeping flat on my back seems to calm things down. That wasn’t the case before, for the last year, were it would hurt around the clock no matter what I would do. This weekend I didn’t have the inflamed epi with the pain and burning on the left side that I’ve been having recently. This seems to continue to be a developing story for a year now and try to describe the ever changing symptoms to a regular doctor. If it wouldn’t be so sad it would be funny. So can Dr Marks be right in one of his posts here, and many of us can get better over time? Did anyone’s pain just went away on its own after a long while?

On a different subject, just like that guy here who waited like 8 months to see this good neurologist from the cleveland clinic, I waited 5-6 months for this experienced neurologist, that I was referred to, to see me and now I don’t know what I’m going to tell him because my pain symptoms don’t seem to be of a neuropathic nature anymore. Any suggestions? Maybe I should go straight to a psychiatrist LOL.

Another thing Radar, how soon after your nerve pain subsided did you go off gabapentin. Should I keep taking it for a while longer?

Thanks again.


#25

That’s a good question. Since I had pain on both sides and congestion I’m not sure why I was steered to denervation first. I was told that I had a good experience with a nerve block so start there and if it worked he would do the other side. Locally I had a block directly into the cord in the scrotum that numbed things up for a while basically from right above the epi down and that was only on one side. I also had one on both sides where I was knocked out and don’t remember having relief from it but I was told I said I was OK as I was waking up so I’m not sure that was a valid response as I was still under the effects of anesthesia.

There was no improvement with denervation in either the neuro or congestive pain. One thing you aren’t really told about denervation is that no one will really touch you after that. So you have this thing done that doesn’t work then what? My options were even more limited after the denervation. The only follow up treatment after that was cryo, botox, or remove it. At that point I decided to just cut to the chase.

I wish doctors knew more about pvps and about those treatments. I don’t know that I would have tried an open end conversion. Testosterone injections would be a great test but in my area you need a proven deficiency to get hormone replacement. I definitely qualify now but I didn’t at the time. A Uro could have make the recommendation but some who perform reversals don’t like them or won’t do them because they state that the lowered sperm production can impact the success of a reversal (less sperm to keep the anastomosis open) and could impact testicle health in the long term.

Realistically I thin the long term risk to the testicles from testosterone injections is less than the risk of pain after a vasectomy so go figure. But it would make sense to shut down sperm production and see if there was less pain prior to a reversal. There isn’t a protocol for it so you would have to find someone willing to do it and that wasn’t an option here.

I had a decent size segment removed also. I’ve had a reversal on the remaining side because I wanted to bank sperm for when I have the other side removed. It was not a problem. I asked the surgeon about any issues that would cause and he said if anything that would just make the testicle ride up higher in the sack and potentially out more stress on the connection so wear briefs or a jock strap during healing.

I haven’t had a sperm count yet but the congestive pain was helped by the reversal on that side. It’s still not where I’d want to live with it forever like this but it’s noticeably better after the reversal. I went from constant pain on that side that was further aggravated by ejaculation to less frequent and more random pain. Sometimes I would even say it’s more discomfort than pain so that’s been an improvement. I still can’t do what I could before but I’ll take the improvement while I’m waiting for further surgery.

I have cord pain and inflammation on that side mainly now that the worst of the congestion is gone. If it’s cut out high like the other one this side would probably be 100%.


#26

The nerve pain on that side stopped after the orchiectomy except for the spot of scrotal tissue. I continued on gabapentin after that while trying to figure out what to do next. I stopped recently because I really didn’t think it was helping. After being off it a while I can confirm it really wasn’t doing anything except causing issues with memory and alertness. Instead of numbing the nerves it felt like it was numbing my brain.

Fast forward a few weeks and at least mentally (clarity, memory, and cognitively) I’m back to where I was before I started taking it.


#27

I think this is one of the big misconceptions doctors have about ‘pain with ejaculation’. If you go back and read some of the stuff from the late 70’s and 80’s it’s not like these patients were complaining about ejaculation feeling like nails were coming out or anything.

Yes, some guys had painful ejaculation but most of them seemed to have pain triggered by ejaculation that would last for hours or days. My theory is that the pain is due to pressure from the epi/vas trying to force sperm upstream during ejaculation and it would have to be reabsorbed or the epi expand to deal with the pressure. Since you’re always making more sperm there was/is no way for it to go back down so it’s painful until your body can remove or reabsorb the sperm that has been forced up.

If you go back to that research, primarily by Silber, you’ll see that pattern of pain after ejaculation lasting for hours or days that was often cured by reversal. Contrast that with what a lot of patients are asked - does it hurt to ejaculate or is ejaculation painful.

What you are describing - pain that increases after ejaculation for several hours (or days) is exactly what they were originally talking about when they reported ‘painful ejaculation’ in the 70’s and 80’s.


#28

The epi, to my knowledge, has some musculature to it. I envision it being somewhat like a dropper or pipette. It’s well documented that your cremasters flex during orgasm. I’m convinced the epi flexes or “squeezes” as well as it pushes sperm into the prostate to combine with semen. I think this action contributes to the pain, especially if it’s already tight. It’s like pushing on an unpopped blister. I also think this is what makes orgasm feel different in some.


#29

Correct. The cremaster is trying to push sperm up to re-prime the systems so to speak. But now the sperm has no where to go. So you have pain from increased pressure from the sperm trying to be forced up into the prostate during ejaculation. That can cause immediate pain in some from the muscle reflex affecting the agitated and inflamed tissue and more long term from the increased pressure in the system. What I was getting at was there seems to more focus on pain during/painful ejaculation which would indicate more nerve sensitivity vs. what was originally reported as pain after ejaculation that builds up over a period of time which would be more indicative of congestion.

That’s not to say that an immediate pain during ejaculation can’t be due to congestion, but that pain due to the muscle contraction would probably be due to nerve or mechanical injury to tissue rather than congestion. Which seems to be backwards from what most doctors seem to ask.


#30

Thank you for answering my questions and for the discussion in general. Very helpful. I still don’t understand how the majority of the vasectomized men don’t have congestion pain. Maybe the sperm goes through their epi or leaks somehow straight into the scrotum and they have no negative reaction to that.

I also took somebodies advice from this forum and tried hot baths, both with epson salt and without it. It made me feel better overall but I should do it more often probably.


#31

It’s an interesting thought. Urology claims it gets reabsorbed. I think that’s only partially correct. I think a signal is sent to the testis to quit producing sperm, and it does so with a feedback loop regulated by hormones. I frankly don’t accept the belief that NO hormone changes take place post vas. I think theres a big shake up but few people feel it. I had a raging epi 1-2 weeks post vas. Now I can’t even feel it. I have no congestive pain, no granuloma, no epi swelling, and the vas is completely occluded. Most vas recipients are the same way. There’s no way a granuloma can dispose of sperm that effectively. Sperm is still produced but I think there’s a feedback loop that significantly decreases the overall production. Find me a research paper that measures post vas sperm production. The actual numbers don’t exist.

Research shows that increases T decreases sperm production. Ironically there’s research that shows a bump in T post vas. Research also shows that pregnenolone tanks post vas. The easiest way to increase pregnenolone is with HCG with ironically increases sperm production. There’s something going on there. I personally believe it’s a localized intra vas change in hormones that ultimately shuts off the testis. There are enzymes inside the vas that do all sorts of stuff, including converting pregnenolone to T. If the vas is occluded, more preg is converted to T, our preg drops, T goes up within the vas, tells the testicles to quit producing, and congestive pain slowly dissolves. Can’t prove it but it makes sense in my brain. Our whole body is run by feedback loops. That’s how we function. Some people have more efficient vas’s than other and are able to control the testis better. It also explains why a vas that is cut closer to the epi typically has more issues, it’s because a majority of those enzymes are found further down stream from the epi.

We also get mixed signals. Your testicles are told to quit producing sperm, yet we continue to blow our loads. It’s no wonder orgasm suffer and people get ED. Of course it’s in your head! Specifically your hypothalamus and central nervous system.


#32

Hey guys!

I’m currently in pain on both sides. That aside it’s more generally on my left side; however, my right side is starting to get more consistent.

Here’s my story:

 While in my 20s I had gotten a vasectomy, then early to mid 30s I started having pain in my scrotum, on the left side. With not understanding what's going on I had visited a few hospitals and they had originally diagnosed me with having testicular microlithiasis and epididymitis. I coped with the pain as long as possible with trying to find a Urologist who would except my medical plan through Medicaid. Unfortunately this took many, many months. 

I then found a doctor but I do have to travel about an hour or so to visit. With trying about 4-5 procedures and operations nothing has helped and if anything, things have gotten worse. Our next move is the removal of one testicle. I am on testosterone gel therapy but I’m having a hard time remembering to put it on. Currently my level is about 197, and been told it should be at about 300. I’m hoping after this next surgery my insurance will approve the next step into therapy and have those little pill like meds and they implant them on your upper butt cheek.

This whole thing has been some trouble getting through as I’ve been fighting this for about 7 years and nothing has worked and I seem to be getting worse; just a bit frustrating.


#33

I’m no expert on T therapy but I’ve read optimal ranges should be between 700-900 for total and above 20 for free. And from what I’ve read, best way to take T is injectable. Also hopefully your Dr is looking at balancing all your hormones. Make sure DHEA, Pregnenolone and estrogen are all in line with each other.

http://www.lifeextension.com/Magazine/2016/5/Why-the-FDA-Is-Wrong-about-Testosterone/Page-01

Just wanted to share - good luck.


#34

I definitely appreciate the feed back. I’ve tried steroid injections but some odd reason it made me quite queezy and dizzy. So now I’m trying the gel therapy. But what I’m wondering since my levels are already low, with removing one would make it worse and in return if my insurance will allow the other way…idk.

I am worried about if I do go through with the operation of removing one testicle if I’ll continue with this pain, be worse, radiate down my leg or which ever. I’m already a bit down and depressed and I truly don’t want to get worse. Otherwise I’m afraid how I’ll feel after…


#35

I had my right testicle removed three weeks ago. I am happy to say out of all the operations (4 in total in the last 16 months) I FINALLY have significant relief.

The urologist Dr Jarvi in Toronto (highly recommended to anyone by me) said most likely it was my epididymis that was probably causing inflammation.

I tried initially to have a doctor perform an epididymectony on me but none would. Either they would do nothing or purposed a reversal. After the reversal the nerve pain was still there. It did help with congestion, which was pretty damn awful, but never addressed nerve pain.

I also had a denervation that in hindsight I DON’T believe helped but helped clear up a side effect of the reversal. After reversal my right cremasteric muscle started to drag my testicle up into my stomach. The slightest touch would send me through the roof.

I know this all sounds quite dramatic but I am even shocked at how bad things were after rereading through my old posts. I was bedridden and on STD for about 4 months prior to both surgeries.

After the denervation I had two HUGE hydroceles both as large and as heavy as FULL Navel oranges. These also caused a very large hematoma because they were pulling on the wound.

Three weeks ago my life changed for the better. I can now envisage a path without daily unrelenting nerve pain. It was so bad I had forgotten what it feels like to wake up without my pain.

This is a very long answer to the original question. But most of us are contemplating this option after all others.

The point I am making is I think I had everything go wrong and I still benefited hugely from my Orchiectomy. Yes, there is a chance of phantom pain and yes it may not work. My counter to that would be if you are mostly back to well but still taking meds and painkillers and if the nerve around your testicle will not settle I think it is a VERY valid choice. If it feels like constant epididymis pain then have all the offending parts taken out.

My urologist said that he thought about just taking out my epididymis but there was way too much scar tissue and I would likely have to take it out anyways.

I pray for all those faced with the same tough decision. I also would NOT recommend a denervation after a reversal. Either do one or the other not both. Just my unsubstantiated no data to back it up opinion.

But if you are going down this path and have had one or the other and are still on meds as I was just cut to the chase. No pun intended

Surprisingly for any interested there is not much difference in appearance. Dr Jarvi said he does not use implants because of this. My wife asked if we could put a blinking snow globe in there he thought that was pretty funny as did I.

Ask any questions. They are all welcome. Scott my heart goes out to you brother. Hope you have the relief I have found.


#36

Answer to some other questions.

Married kids. Why else get this done :slight_smile:

53 had surgery 19 months after vas.

Libido is great. Always was pretty good that why I went for vas.

Do not feel different at all made love twice already both times felt great. Gotta take it slow, my fault on that one. Wife is very happy.

Not taking testosterone but who knows might give it a try. It works for Sly, Terminator, Floyd Landis and Lance.

Sex was good. Still had it with pain before this surgery but was always an ordeal afterwards. Ice, meds, etc. But still our primary drive even with all that.

No thoughts of Caitlyn Jenner, not that there is anything wrong with that… My thoughts are that is more a psychological transformation rather than a physiological one. At least with only one testicle removed. IMHO again.

Hasn’t had ANY affect on me. I was so damn glad to get the damn thing out.

I gave mine up for science. Was asked very respectfully about that.

It’s funny medical staff are very reverentil about the whole process, which I understand, but for us poor souls we have gotten so used to this unfortunately I could drop my drawers at the reception desk in the end.

So I had no problems giving it up or lliving with it gone and it was not a solelm loss of my masculine identity.

The damn thing was a pain in the ass was getting close to cutting it out myself.


#37

Further to what Radar has posted it’s tough to have anyone touch you after a denervation.

My urologist would not go the radical route BECAUSE of my denervation I had a very bad hematoma that took forever to heal from the inside out so he had to go in through the scrotum and reach up to retrieve as much cord as he could.

My thoughts and experiences are remarkably similar to Radar and I am so thankful to him for his posts. Just by chance he posted about a week before my surgery and his positive post about Orchiectomy were extremely helpful.

I recognize both knocking denervation and promoting Orchiectomy are VERY controversial on these boards but all our bodies react differently

In my case I knew if I could just have my right nut taken out it would go a long way to where I was goig to be.

Luckily it worked out. My thoughts like Radar it is not as radical solution as what was done to me but it takes the rare urologist to step up and do this for us.


#38

For most men loss of a testicle is psychologically the monster under the bed. I think after being in pain for so long that most would be willing to make that trade off to be pain free. Pain is emasculating probably worse than losing a nut. The main worry is that you get the testicle removed and you are still in pain or it’s worse. That’s a significant concern and the only fear that would hold me back at this point, that and worry of the psychological impact. My pain is pretty high up. I don’t know if it’s in the cord or what but I feel like it’s the tissue around the vas in the cord above the anastomosis. When I sit the spermatic cord is pinched by my leg, and the base of my penis and the chair and I kind of feel like I’m sitting on it a bit too. I think an inguinal removal might get all that fucked up cord out and leave me pain free hoever I fear is that it might cause more pain in that area. I think there is a shitload of nerves in and around that part of your groin.


#39

I’m almost at that point with my remaining one.


#40

I feel like I’ve been biting my tongue about this for some time now. How many times have we heard about no improvement or new/worse pain with denervation? It is just a coincidence that we as a patient population haven’t had any luck with the procedure? We hear a lot of good about reversal, either “cured” or greatly improved. There isn’t that kind of feedback about denervation. If I recall a few of us all had it around the same time last year and I don’t recall any of us having a good outcome, some with new and worse issues.

I’m beginning to think the only thing the procedure has going for it is that it is covered by insurance and it’s a high payout surgery compared to an orchiectomy.

Going back over the last couple of years of results it would seem that the best approach is:

Time
Anti-inflammatories
Usual PVPS meds

If that doesn’t work:
Reversal or Orchiectomy - both require a significant amount of thought and consideration before proceeding.
If either of those isn’t right for you do nothing and try to live as normal of a life as you can.


#41

Your reply is why I am conflicted as what path to take.

90% of the things I read, the people who’ve done that procedure, it has not worked for or their pain has gotten worse. And I hate gambling. So those odds are not appealing to me.

That why I keep leaning towards the reversal or orchi but that requires a support system at home. And I absolutely DO NOT have that! So it just leaves me with time and hoping to find a med that works.

I really appreciate this board and everything everyone has posted. While it has come in handy to help me on my search for an answer, i do not like that we have such an issue to begin with. Like many of you, my marriage is failing(or for some of you it has failed already). My home and family life is a mess and I am struggling to keep my contempt and resentment inside. I know I should let it out as the stress isn’t good. But I don’t want to take it out on my kids and wife anymore than I have(even tho the wife absolutely deserves it!!).

So thank you all for posting and helping guys like me who haven’t figured things out. Hopefully one day people will know what can really happen after a vasectomy and we can all get some relief.