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Should I fight for an Orchiectomy right out of the gates?


#1

I realize that I’m only 12 weeks into this but I see the PVPS specialist in my town next week. I have been feeling better overall with a Gabapentin, Elavil and Meloxicam regimen. However, now that a lot of the groin, perineal and rectal pain has tempered down, I’ve noticed that my right testicle is pissed off. It’s constantly aching, sore to the touch, and my epi and vas site feel tightened and distended. I am living at a current 3/10 with occasional upshoots to 5-6/10. I’ve also noticed more pubic burning than was there before. My guess is that the irritated/swollen right side is causing referred pain throughout my pelvis and causing muscular dysfunction. I have read many posts on here regarding orchi, some good some bad. I wouldn’t normally consider this a first line treatment but as stated in a previous post, my right side testicle never developed with puberty and is only the size of a marble while my left is normal sized. I had an ultrasound in my teen years that showed blood flow so it wasn’t ever deemed a real issue. I do remember the urologist at the time said that when I got older, and had fully grown, I could always have it removed and a prosthesis placed if i was body conscious. However, i haven’t really cared about the looks because i always functioned normally and no females ever really seemed too care either. I also never thought it did anything for me, ie sperm or hormonal production so when the vas surgeon said it was okay to proceed with the vas, i didn’t think twice. I’m still not sure it does a lot for me or maybe it does, but it’s definitely angry. I am really thinking of pushing for the inguinal orchi for multiple reasons. One, i dont think a reversal down the road would be the right answer for me because of its size and how it would hang, Second, I’m also not sure i would consent to a denervation. Third, I worry about the centralization of pain and want to get this taken care of quickly. I may be unique with this anatomical difference but wanted everyones opinions whom have dealt with PVPS for longer than myself. Am i being too aggresive, would you have it removed if the other is functioning pain free, etc? Funnily enough when i went to my first uro he couldn’t correlate my symptoms. He said he had performed so many that there would be hundreds of men complaining of my symptoms. I replied maybe my anatomy is different, at which he scoffed and said your anatomy is no different then everyone else’s. Ha, apparently there’s a lot of men running around with one marble sized testicle. Thanks for your thoughts.


#2

Yes, absolutely fight for the orchiectomy. If I had done that , I would be cured and pain free right now. Instead, I allowed my urologist to bully me into having denervation. This surgery caused permanent, agonizing nerve damage pain that is far worse than my original pain , and I now have to commit suicide as a result.

The urologist got what he wanted. He avoided having to remove a non-cancerous testicle, even though what he did destroyed my life. I am now in agonizing permanent pain and completely destitute , and that urologist gets to happily go on with his practice and his life.


#3

Thanks for the advice, and I’m truly sorry for what has happened to you. I’m not going to do a denervation at all. Even my uro said it’s a bad idea. I’m just looking for opinions about going straight to an orchi this early on.


#4

Yes, fight for it.

Nearly 5yrs in and still in hell.

Dr’s here refuse to castrate as it is “too drastic a move at this point” - makes you wonder when they won’t feel it is too drastic! Of course it is drastic but I’ve tried all they’ve thrown at me and it has failed and only drastic measures are left.

However one surgeon did have an excellent point - phantom pain can and does occur with removal - my argument is yes it might but it might not, yes it might but that might be less than current pain…they know better apparently .

Every surgery you consider will carry a risk of increasing pain - epidydectomy left me screaming at times, wife is used to me shouting / screaming in agony now…it has died back but still happens.

Specialist nurse came up with, to me, a novel way to try and help. I’d been on morphine for 3yrs so getting me was going to be bad (it was bloody horrendous) and suggested methadone to hit pain instead…as well as help with withdrawal.

Morphine doses hit palliative levels and minimal effect yet low dose of methadone did reduce pain massively for a while but now dosing is heading south again as tolerance levels increase and pain slams me - and I can’t stay on it forever and side effects are not nice

Fight for it now as it will take ages but in meantime try every possible thing you can - you can always change mind prior to operation if you find something to ease pain or simply change mind. It is a massive decision and the slow time to arrange will buy you much needed thinking time.

As much as I’d urge you to fight for the option, I would also strongly urge you to think very hard, speak to a professional & family and really consider if its really an option

take care of yourself


#5

Get the injections first of canalog or what ever it is into the cords. If that helps the pain then you know it’s something in the cords. I wish I did this before my reversal. It’s about 6 months and I still am in a lot of pain. Can’t sleep on my side still and what’s the kicker is I still have the other pain as well. Burning in urithra prostate pain. This shit is a big deal. You said your a few weeks in? Does that mean after vas or few weeks in pain?


#6

I’m 12 weeks post vas and pain started within first week. I’ve had an inguinal block which proved my right testicle is causing me issues. I can also reproduce a lot of the refered nerve pain while moving it so I believe its rubbing on something. Thanks for the advice guys. I have my appointment with the microsurgical uro in my town tomorrow so I’ll see what are his opinions and suggestions.


#7

I hope he has something good. My reversal was unbelievable. The pain after was nothing I could have imagined. Still can’t sleep on my side and I’m 5 months out. I think your childhood issue may play a part in your pain also. Lots of ice. Maybe ice and a hot bath. Try everything possible before surgery.


#8

12 years Post Vasectomy and 10 post Orchiectomy (left side the pain been on since day of surgery). Don’t do it!!! It DIDN’T HELP ME AT ALL! Knowing what I know now and if I would have had a reversal that first year I probably would have been pain free. Instead I think Orchiectomy has caused more nerves to be trapped withing scar on my inner thigh and have additional phantom pain to the added NON STOP Throbbing in my left chord. I live in hell with control of medication that only dulls the throbbing some in addition worse days post intercourse(post ejaculation) ALL I WANT OT DO IS GO KICK SOME PUPPIES. I really think that when I get to my 60s-70s I’ll be in UTI/constant throbbing and wearing a diaper hell then. I curse the day wife and I thought Vasectomy was a simple fix to our dilemma and trusted the small statements of “oh You’ll be fine, You’ll be back to work no more thoughts about getting pregnant again”. But all I can do is bite my lip, cringe from pain and lend a few words of advice now days to any or all who think of doing VASECTOMY.
Still In Pain , Praying for all of us! For a cure or some relief maybe someday


#9

I’ve thought to reply to this topic, and held off. I’m just going to say what I really think. This has got to be one of the worst ideas I ever heard of. Who in their right mind would castrate themselves as a first option, or before giving reversal a try first?

With all the information available in this forum, I don’t get it.


#10

Thank you for the responses and I appreciate the honesty. I’m not taking this thought lightly which is why I asked the question. If my testicle wasn’t the size of a marble, I wouldn’t even be considering it. I don’t believe a reversal would be a viable option because my left testicle already sits an inch to two lower than my right and that would put tremendous strain on any vas reconnection. If i do an orchi early, as they do with cancer patients, the risk of pain/phantom pain would be low which is why I am looking into it. Although I appreciate you being candid, there’s little reason for the insult as I’m already in a tough position.


#11

It wasn’t meant to be an insult brother. Think about what you are saying. And, where do you get the idea that having your testicle removed early will give you better chance of ever being pain free? This isn’t testicular cancer, this is pvp/s. Don’t come up with what will work, and not work on your own regarding removal, bad idea. Ask some real experts before you end up worse off, and have a possible lifetime of regrets far as your choices.

Also, do you really expect people to hold back their opinions, what they really think, etc etc in such a trivial time in your life? I’d hope not. Let’s keep in mind that this forum can be read by most of the entire world.


#12

No worries Ringo. I want the worlds opinion just in a respectable discourse. Your story is actually one I’ve read through and I value your opinion as a veteran PVP guy who’s made these tough decisions before. I’m not a big social media person and have never blogged before. I hate the lack of face to face interaction. The problem with this condition is that I can’t find anyone I know that’s had serious issues after a vasectomy to sit down and have a beer and talk to about this. I wish we could all meet in a support group and discuss these issues. Again, thank you for honest opinion and for anyone else reading this please don’t hold back. This whole situation sucks and I’m just nervous about the future and not sure how to proceed.

Cancer patients typically present with some sort of pain, get diagnosed and have the orchi pretty quickly which doesnt give the body time to centralize. If I had an orchi relatively quickly, my pain shouldn’t centralize thus the pain should resolve. That and the fact that it’s underdeveloped are the only reasons I am even considering it. It would be an educated gamble but so are the other procedures it would seem.

I actually just met with the microsurgical uro in my town. He was honest with me that this is a tough condition. We discussed all the options ie reversal, denerve, epidydmectomy and orchi. He said that the only reason orchiectomy is on the table is because of its congenital underdevelopment. There’s definitely a granuloma present that’s causing a lot of my pain. Currently, since I’m back at work we are going to wait and hope before I do anything. I have a skype appointment with the PUR docs next week to get their opinion too.


#13

I hear you brother. From my point of view, if you did this to yourself, and end up worse off, and I never said anything to you when I had a chance, I would be a bit upset with myself for never giving you a shout.

I’ve known of @CarolinaEdgar for over 7 years, and you heard what he had to say about this idea as well.

All urologists have their own ideas on pvp/s, vasectomy, reversal, removal, etc, etc. Theres so many contradicting opinions out there far as treatment options, where to begin, etc, etc, it’s hard to know who, or what to believe sometimes. These opinions vary in-between a handful of top tier pvp/s docs as well.

I feel you are making a wise move reaching out to experts of sorts in the field before you make any sort of final decision.

Good luck


#14

If the majority of your pain is from a granuloma, I’d get on papaya seed as fast as you can. Granulomas are there to address the irritant. You shut off the irritant, the granuloma should disappear. This is a reasonable and viable option that is completely non invasive. Unfortunately, PVPS treatment has become trial and error. In such a case, it makes the most sense to start with the least invasive and work down the list until you are at a point that you can live with. Of course your situation with your abnormal testicle makes you wonder if it’s even worth keeping. I understand where you are coming from there. The problem is, there’s no guaranteed fix and most these docs don’t give a rats about your personal wellbeing.

My pain is central. I’ve been told this by three different physician, two of which were with Mayo. It’s a crappy place to be…but…I could be so much worse off. I haven’t done a damn thing surgically since my vas two years ago and I think I’m better off because of it. If there was an easy fix, we wouldn’t be here.


#15

I second this. I feel it’s worth a shot to.


#16

@CarolinaEdgar You’re comment about kicking puppies made me laugh out loud in the doctors office waiting room. Thanks man. I am praying for all of us too. I believe that we aren’t that far away from better pain meds. A lot of good research being done and a lot of money to be had by the pharma companies to make them. It won’t be next year but within the next decade.

@Choohooo @RingoStar I started papaya seed last week so hopefully it will help. I agree to start simple and work up. Thanks for the advice.

Side note. If anyone’s ever in Louisville, Ky and wants to get a beer and talk about our balls (HAHA) let me know. Would be nice to meet someone face to face.


#17

Choohoo - at the risk of asking you to hijack this thread, I think you made a point that I’m only beginning to understand and I bet others are in a similar position.

What do you mean when you say your pain is central? Understanding this concept (that I regret to hear you have) might help the OP with his decision. I always thought was emanated from a source, eliminate the irritant, and you’re fine. But it sounds like “centralized pain” means the pain becomes hard-coded in the spinal column or brain away from the source, so removing the irritant doesn’t do squat. About right?


#18

@RingoStar CS isn’t a new problem but it’s fairly new to the medical community. If you ask docs about it, most will recognize the term and shrug it off. That’s impart because it’s very poorly understood in general. Everything involving the brain is poorly understood. Essentially what happens, you have a painful stimulus and your CNS (brain/spinal cord) does what they call “wind up.” Your body doesn’t like pain and your CNS is designed to minimize it. This is the classic “fight or flight” response of the sympathetic nervous system. See a bear, run away. When pain is severe and seems to last along time, your CNS gets stuck in the chronic state of fight or flight. Doing so takes a major toll on your body as do the antagonist systems.

That’s about all they truly understand. Some believe that your body gets hard coded, like you said, and you feel the pain even long after the injury has healed. This is where allodynia vs hyperalgesia comes into play. Others argue that the injury never truly heals and you develop this hyper state of pain. This is often the case with peripheral nerve injury. You get this neuroinflammatory condition that can move around the body. They believe this is how RSD/CRPS, even fibromyalgia begin to develop.

There are a couple important take always here. Your sympathetic and parasympathetic (feed and breed) nervous systems prefer balance. If one goes on overdrive, it’s typically at the expense of the other. This is why things like sleep, sex, and digestion are affected. You hear complaints of impotence, IBS, and fatigue. Your body is burned out from sympathetic overdrive. All the systems that were trying to help “that caveman run away from that bear” get stuck in the “on” position. The last thing your brain wants to do is have sex and eat a sandwich when you’re running from that bear.

This is also why patients can go on to develop completely unrelated issues. I’ve developed bad arthritis, fatigue, apnea, chronic migraine, intracranial hypertension, and of course depression and anxiety.

Treatment is as difficult as understanding to issue. Are we chronically hurt, are we healed but the brain can’t shut it off? Who the hell knows. The only thing I understand is how closely I can relate.


#19

I’m aware of the centrilization of pain. Basically there’s 2 types of pain nociceptive and neuropathic. Nociceptive is most often the result of an injury that sends chemicals causing nerve activation ie the scrotal incision causes pain but as it heals the source stops transmitting chemicals and the pain goes away. Neuropathic pain results from damage to the nerve itself causing pain signals sent to the brain because of damage to the nerve itself ie the cautery used during the vas actually damages the nerve and that damage transmits pain. A lot of times people can have both types of pain. In most situations the body can adapt and the pain will resolve. However, in some cases the pain doesn’t resolve and the pain will centralize meaning that the body will still recognize the pain after the injury or nerve has died or been removed. The exact mechanism of how this works is not fully understood nor do we fully know how long it takes for that process to take place. It can vary from person to person. For example people having knee replacements often have pain for months or years but after a knee replacement most will heal without pain. But in a poor few that pain will continue even though the stimulus was removed because the brain will always recognize the pain.

This is what scares me the most. I’m not sure how long it will take for that to happen in me especially because i believe I’m facing both types of pain. Nociceptive from a granuloma and nerve damage from either the vas itself or the granuloma damaging a nerve. I’m taking the neuromodulators, gabapentin and amitriptyline, in the hopes that by tempering the nerves I can delay that process and allow my body to heal. I’m also tempted to be aggressive and have the source removed, ie the orchiectomy, to prevent that from happening.

PVPS is a beast because there is good evidence to be patient and not act immediately because most men get better with time. It’s just hard to know if you are that person which is why I was/am considering being aggresive eventhough additional surgery brings risks within itself.


#20

Well said @Kyvas