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Curious if Octiectomy has worked for anyone


#1

I’ve been through many of the steps discussed with me but unfortunately I’m still dealing with lots of pain for about 6 years. I’m going in for steroid injections as my testosterone levels are extremely low and there’s some who have experienced some relief from them as well. So I’ll be trying this out for a couple months. If there’s no results and my hopes aren’t very high


#2

Also I’d really love to connect with though via messenger online or via email.


#3

Hi Ron,

What is your story if you don’t mind me asking?

We have one guy here that went that route and it did not help him. I would imagine hell chime in here himself once he sees this.


#4

I’ve had one. Did it help? Yes it’s been the most beneficial treatment I’ve had. Would I do it again? Yes, in fact I want the other one removed.

Do I still have some pain? Yes but not in the spermatic cord or testicle. I haven’t had “phantom pain” or any other sensation of them since I woke up from surgery.

What still hurts on that side? It’s hard to explain if you don’t have an empty or partially empty scrotum, but there is a spot on my scrotum that causes discomfort. If it were gone I would be 100% fine on that side. I can pull it away from my body and isolate it - there is some sort of defect there. When it’s pressed up against my body it hurts. Ironically enough I hear that a plastic surgeon can address that if I have the other one removed first. I could probably take care of it - although that would lead to an “interesting” ER visit to say the least.

That being said the orchiectomy took care of all of the pain in the cord and testicle. My mobility improved greatly after removal. Once I healed walking was no longer painful on that side and I was able to start doing more than I previously was. I feel like my remaining testicle is what’s holding me back from doing more.

I had an inguinal removal. Perhaps fight is the wrong word but it was definitely a struggle to have it that way vs a scrotal removal. The surgeon said he had never done one that way except for cancer patients. He freaked out when I said that based on the improvement I wanted the other side out - so as usual with pvps I’m searching for a new urologist.

Have you talked with your doctor about it? I’d recommend finding an endocrinologist that you like first and making sure your GP is on board with your plans too. If you have any questions let me know.


#5

Hey Radar,

Some questions for you.

Are you married?
What affect has this had on your marriage if so?
How old are you?
Do you have kids?
How long after vasectomy did you get orchiectomy?
How is your libido?
Are you on HRT?
How are you dealing psychologically?
Are you bitter?
Did you have testicular or cord pain?

Really when you think about it most guys that get vasectomies don’t “need” their testicles. Losing them though is probably the worst fear psychologically that lurks in the background. It is sure as shit the monster under my bed. I am furious I let someone fuck up my balls after pretty much lying about the odds of complications.

At the same time what good are your balls if you lose everything else that comes with pain free life like family, career, joy etc.

I think you have a perspective on thos that could be helpful.

Thanks,
Mike


#6

Are you married? - Yes

What affect has this had on your marriage if so? - PVPS has had quite an impact. Let’s face it, none of us are the person we were before the vas and we are somewhat stuck in time waiting for this to end. Eventually everyone around you moves on.

How old are you? - Mid 30s

Do you have kids? - Yes

How long after vasectomy did you get orchiectomy? - About a year

How is your libido? - OK

Are you on HRT? - No, although I’ve had levels tested and am very low for my age. My endo and I are holding off on treatment until after my next surgery.

How are you dealing psychologically? - Everyday is a challenge but I’m doing OK.

Are you bitter? - No I’m not bitter. I’m frustrated if anything. At this point I’m pretty confident my problem can be fixed, I just have to find a Uro willing to help. The ones local to me are in denial when it comes to pvps. I seem to get lumped in with the “chronic orchalgia” patients - which they are equally clueless about.

Did you have testicular or cord pain? - mainly epi/cord with scrotal skin pain on one side.


#7

After a vasectomy you only need your testicles for hormonal purposes. You’re done from a fertility perspective unless you have a reversal - and patency is a crap shoot in the long term.

HRT for men isn’t like it is for women. You can be successfully treated and live a normal life, more men are doing it than your think. Men being men just don’t talk about it as much. Once you get your delivery method and dosing worked out you should be good to go.

So you really don’t even need them for hormones if you are willing to accept the baggage of HRT.

I used to be worried about losing them. After becoming that ‘1-2% of men that develop severe pain after vasectomy’ the AUA talks about I was still worried about losing them. Then waiting failed. So did antibiotics, anti inflammatory, anti depressant, and gabapentin. Then denervation failed.

Then I was like ok, there is really only one thing left to try.

At this point I don’t understand why men are so protective of their nuts. Having one removed didn’t change who I am, certainly not as much as pvps does. Having it removed gave me some of my life back.

I’ve talked with a lot of guys who’s had orchiectomies for various reasons from cancer to pain to even just a desire to have them removed. Generally they are living normal lives.

I think too many urologists got in trouble for treating chronic ‘orchalgia’ with orchiectomy without looking for other causes of referred pain. I posted the playbook in another topic that you should run through to validate the pain isn’t secondary to another cause. Who would want to get their nuts removed only to find out it was referred pain from their kidneys? I think the cause of our pain is pretty obvious for us.

Then you have the urologists who do scrotal removals for pain - because that’s what they do for torsion. Torsion is acute pain. With chronic pain and mechanical injury it has been shown that inguinal removal has a much higher success rate.

So to recap, you have urologists who don’t know much about the distinction between treating chronic orchalgia and pvps, who sometimes don’t do their homework on ruling out possible causes of pain, who perform a surgery in a way that has been shown to be less successful in resolving pvps pain - because they do it that was for a totally different type of pain.

Just like anything else dealing with pvps it’s frustrating.

I guess what I’m getting at is our nuts are already fucked up. You can say with a high degree of certainty they will probably remain that way as long as they are there. Removing them might fix the issue. Is so great. If not, well you’ve done everything you can.

What I’m more worried about is the excessive treatment with nerve blocks, denervation, neurectomy, etc causing damage that can’t be un-done. How many guys have you read about here who’ve had denervation who have had no improvement, or worse yet new issues or more pain? Granted we’re some of worst cases but you’d think there would be more success with the treatment here and on other sites.

It sounds good - keep your testicle and lose the pain. It’s covered by insurance. You remain infertile. This is just my observation but it seems like the ‘marketing’ of the procedure is out of line with the results. Kind of like a vasectomy.

What about the guys who had a little pain that they wanted gone but now have a new bucket of issues? If a cord block gave them relief and there were no caused of referred pain an orchiectomy would have probably cleared things up. But because we are so focused on keeping our nuts we don’t consider that. So they have denervation and get a new set of symptoms. How do you address those? Would an orchiectomy even be an option at this point or are they due to an issue from the nerves being cut?

Then there is the issue if it were a more commonly talked about treatment for pvps that alone would scare off most men from having a vasectomy. “No, no there are no real problems. But you might lose your nuts”. I see the take rate dropping a lot after that.

I think if you get to the point where your pain requires surgery you should be offered reversal, denervation, or orchiectomy. They all are valid treatment options with their own situations they work better for and come with their own sets of baggage and risks.

And if you get to the point where you could lose everything - ask yourself honestly are your nuts worth it?


#8

In my case I was directly lied to. I have paperwork from the urologist that states the exact opposite of what the American Urological Association states. He later asked me if I was experiencing something he assures his patients does not happen and diagnosed my with something that, yet again he says - in writing - does not happen.

When he found out I still had that paperwork things got really interesting.

Later I asked another doctor in town about about. He said “Well if we told men about all the risks they wouldn’t have the procedure.”

I had to remind him that it was unethical at best to lie to men about a procedure just so they would have it when you know that if you told the truth it would affect their decision making process and likely result in them not having a vasectomy.

I talked with the doctor and had what I thought at the time was an open and honest conversation about the procedure. Had he told the truth about any of the items he provided false information about I wouldn’t (and likely many other men) have had the procedure.


#9

did You sue this guy?


#10

Yes no way would I have done it at even 1 in 20.

I believe the number 1 in a thousand exists only because it sounds like an acceptable level of risk. It also sounds enough like a euphemism to be passed off as such.

I think Victor got the bogus citation removed from Walsh Cabell Urology for good.


#11

Huh? What’s that mean


#12

Cambell Walsh Urology is a famous text for Urologists in training. I think it’s pretty standard to have a copy. There was a mention in that text the risk of pain after vasectomy was 1 in 1000 and there was a reference to a research article to back up the statistic.

Victor Nguyen is the webmaster/admin of this site. He is an engineer for Mozilla and has a very analytical mind. He decided he would follow up on that referenced paper to see how the authors came to that conclusion.

What he discovered was shocking. He got a copy of the research paper cited by Cambell Walsh and realized after reading it the research paper was itself quoting/referencing Cambell Walsh Urology as the source of the 1 in 1000 statistic.

It was a completely bogus circular reference.

It was completely bogus.

There is NO research that shows such a low risk. The real research on the subject shows the risk to be more like 15 to 30 percent of men have chronic pain on a continuum ranging from mild discomfort to crippling, life-altering pain.

Victor took his findings to the publisher and as a result they promised to remove the reference from future editions of the text.

How much f’ing damage was done by that bogus number floating around?

Victor has probably done more to end the propagation of that shameful fraud than anyone and he did it by simply following up and doing his research.


#13

Basically what Mike said. Campbell Walsh published a figure that most doctors use that was out of line with reality. That’s where the 1 in 1000 number comes from. What’s funny is that in the review edition of the same version they have a question that says vasectomy is associated with a 1 in 10 complication rate.

Guess which number doctors were going with?


#14

Long story about that. Basically if you thought dealing with doctors about pvps was frustrating try dealing with the courts at the same time.

Having someone lie to you in writing about critical pieces of information is usually a slam dunk. Unless that person is a doctor.

Ironically it was a doctor that originally asked me to have a lawyer request my records because he thought there was something wrong about the records he received.

I might make a long post about it someday but right now I’m focusing on trying to get my next surgery lined up.


#15

Do you know what chapter? I found something where you can buy the chapter.


#16

This post is a very interesting read. Thank you.


#17

@backintime30 you want the 11th edition of Campbell Walsh. It costs a small fortune.

/me grumbles something about academic publishing.

http://store.elsevier.com/Campbell-Walsh-Urology/Alan-Wein/isbn-9781455775675/


#18

Do you know the chapter? I can buy chapters it looks like on another site.


#19

Bit,

Why would you want to spend so much money on that?


#20

Chapters are 11.99 each I like read it see what I can get from it.