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My Bilateral Orchiectomy Journal


#41

@Thissucks Man, I really admire your courage to do this.

If I don’t get relief from the reversal, I think I would benefit from having my right one taken out, but to be honest, I don’t think I have the ‘balls’ to do it. I think I’d feel mutilated and angry that I had to lose a body part because of this ‘safe and simple’ procedure.

You’ve got more balls than I do man, and balls do not make a man a man.

I’m really happy this worked out for you.


#42

Thanks @vasregret! I hope no one here has to join this club and pain relief occurs through other less extreme measures but for those whose situation has come down to life or death - orchiectomy “could” be their salvation. Here are some of the positives I told myself to psyche myself into the procedure-

  1. being on T is a whole lot healthier than being on poisonous pain meds.
  2. I probably won’t go bald.
  3. Eunuchs live longer
  4. As far as the whole growing boobs, weak muscles, low Sex drive and ED issues (these not being a factor on HRT) etc. well I know men with balls with “boobs” cause they’re overweight, men with balls with ED and low sex drive. Besides a good diet and excersise and these really are not an issue.
  5. And the BEST part. I get the benefit of NO CONDOMNS without the autoimmune issues of gazzillions of toxic sperm entering my bloodstream every day.
  6. I’ll never have to worry about prostrate or testicular cancer.
  7. And then finally the pride that comes with defeating a disease just as severe and devastating as many forms of cancer. Not to downplay cancer but I’d trade testicular cancer over PVP any day. My dad survived stage 4 kidney cancer given six months to live and 9 yrs later is the longest living stage 4 kidney cancer survivor alive and the healtiest he’s ever been and looks at what I went through as just as bad and we have more respect for one another than we’ve ever had.

#43

Haha, the no condoms part is pretty awesome, I mean that’s why we got the vas right?

Did you have pain up the cord or any abdominal pain? I get a lot of right sided cord pain that shoots up into my abdomen. Actually it’s much worse than the ball pain I have and I wonder if removal would help.


#44

That’s tough. I have no experience with that. All my pain was localized to my vas and epis. Sounds nerve related. If it’s the gf nerve inguinal orch could work cause the gf nerve is within the cord and cutting it within the cord could act as a Neurolosis of sorts but if it’s the illioinguinal nerve that could be different since that nerve runs alongside the cord rather than in it.


#45

How exactly does orchiectomy prevent prostate cancer?


#46

Prostate cancer feeds off of testosterone. Some men will get orchiectomy for prostate cancer in order to cut off T. Even when taking HRT there is less concern if signs appear all I would have to do is lower dosage or eliminate it altogether


#47

You mentioned issues with sleep and T therapy, do you find it causes insomnia?

Any issues with excessive hair growth, agitation, sweating?

This is turning into an AMA lol


#48

I have no sleep issues on T. When I’m off T the low energy levels give the feeling of being more relaxed so sleep can be better with no T.

I have experienced the hot flashes on the days I don’t apply my gel but it’s not bad at all. I had worse hot flashes pre orch when my PVP caused my body to be in a constant state of fight or flight lol

I haven’t experienced any physiological changes. I don’t expect to though since I don’t intend on ceasing HRT. I do however often think about ancient eunuchs who had no HRT. They lived pretty productive normal lives being over Kings harems and such so worse comes to worse and an apocalypse happens and I can no longer get HRT I think I’ll survive lol.


#49

@Thissucks … Cutting into the abdominal wall I’ve herd is tough (excuse the pun). How has that been for you?
Maybe the fact that pain meds work for me has been a bit of a mixed blessing/curse for me. But I don’t take them because i want to, i take them because i “have” too. That is a common missconception that even doctors seem to have regarding my use of pain meds. They see how long that i have been using them and they seem to go cold…downright unfriendly. But if I could find a urologist who seemed like he/she gave a care that I have chronic pain because of this/these operation/s, and I could find one who would show some genuine compassion and they would try to help me end this nightmare of pain …they would see that i would quit them within a month or two of my pain being fixed! The doctors who see how long that I’ve been on them act as if I “want” to take them. They seem to be totally unconscious of what they have taken from me (and my wife!). They have stolen my love of sex and my happieness and calm after! And they really don’t seem to care! And that sucks (excuse this pun especially)!
What I was wondering …Would you have gone this route if pain meds and nerve desensitizers (like Gabapentin) would have worked for you? Because you sound like they didn’t…work for you. You also seem to sound like you had a “bit” of luck by having a friend who is a urologist. I have not found a “single” urologist who even acts like they understand why i might be late for an appointment much less are willing to take the time to cure a mysterious pain like PVPS. I am in a lot of pain. As I am sure many men on this board are also. And I know we have too many people and not enough doctors who understand PVPS and a political system that neither understands either one while at the same time wages war on the public for it’s love of both money and pain killers.
But i really really digress… Did your urologist and you work togeather to convince a cancer surgeon that he should take both of your testacles out or how did that come about? I’m a little foggy on how you got that to happen for you. Every urological surgeon that i have talked to seems to be so confident that he can fix it with his knife and microscope that they wouldn’t even talk to me about a proceedure such as this. You also seem to have a very in depth understanding of all the bits and pieces of the anatomy along with the acronyms for all of the proceedures to fix the problems of that area that I barely understood one of your articles (sorry). I didn’t understand half of them. Are you a doctor yourself or is there a particularly good anatomy book that you could recomend that helped you understand all the parts? because I (a) can’t even find a urologist to seem to care about my case and (b) i really dont understand all of the structures that i could talk intelligently if i did. Again if i could get someone to take them out tomorrow, i probably would. And yes eunics did live longer but they also lived better than the common person! lol. I’m not sure there is a one to one corelation there…but there could be. I’m sorry if i sound rather pathetic but my spirt with dealing with this damn problem is ebbing. I am not sure i care about happiness or life for that matter any more.
Yesterday i was watching Indiana Jones and the last Crusade. And young Indiana and this kid were fighting on top of a train car with a rhino beneath them. The rhino was smashing the roof of the train car with his horn and the two fighters didn’t seem to care much until the horn went up between young Indianas leggs …and suddenly you could see the despiration to get the fight off of that train car “and” you could almost hear the audience nerviously laughing. And the odd part to “me” was …i was wondering if the people in the audience even knew what would really be the cause of the great pain that was perceived …if the rhino horn hit the pennis…or the fhino horn hits the balls! And I can bet you they don’t. Of coarse its the balls! And if you would meet the urologists that I’ve met …you wouldn’t know if they knew or not either!


#50

It’s funny you mention a movie analogy cause I’ve often thought about that scene in James Bond casino royale when he is being tortured by having his balls struck with a ball on a rope. That’s pretty much what a lot of us PVP guys experience every day. Regarding the terminology, I didn’t know any of that before PvP. Hell I didn’t even know what an epididymis was I just thought it was all testicle lol. That all came from mainly countless hours of research on this site. The risk of inguinal orchiectomy is illioinguinal neuralgia or damage to the illioinguinal nerve but this is VERY rare and next to impossible if done by an experienced surgeon cause that nerve is easily identified and separated from the cord and procedure. Most urologists are trained to do all sorts of surgeries including kidney and testicular cancer. I only had to work with him. I HATE pain meds. My personal thought process is I’d rather cut my nuts out before potentially causing more irreversible damage brought about by poisonous pain meds. Thing is when PvP becomes chronic and permanent in that time has not healed it we only have three options for a cure- denervation or other nerve surgeries, reversal, or orchiectomy. Once we do our research and get an idea of the cause- congestion, nerve, scar tissue, etc. we need to find a uro that is an expert in that procedure and will do what we tell them to do because if I learned anything from this it’s no uro knows how to fix us. We have to know our bodies and do our own research. It’s not like cancer where something tangible shows up and there is a standard route the doctor will take you down. In that sense PVP can be more hopeless than cancer. But that’s not to say there are not great uros out there who are experts in their techniques- be it denervation (Pur Clinic), reversal (Marks), or orchiectomy (my doctor) that can potentially cure us.


#51

@thissucks i didnt start having great intense pain until years after my vasectomy. I couldnt even figure out what it was or what was causing it. If you have read a lot on this subject … This is why so many urologists get away from causing pain to their patients because in many cases it doesnt hit for 20 to 15 years. I was one of those cases. But i started getting worse and worse during and after sex after time. But i noticed a soreness and change of intrest right away from some things that i loved to do almost right away. I couldnt get a sympathetic ear from any urologist i talked to. Nothing worked , antidepressants , antiinflamitories, nothing except narcotics worked. I’d quit them tomorrow if i could be cured. It was either be curled up in a fetal position 8 to 12 hours after sex from the pain or take the pain killers. I chose to be out of pain. I find gabapentin, and anti-depressants more dangerous and nerve destroying than narcotics. But i guess we are all different. I just wish that wasen’t part of the equation. It creates bias and mistrust between fellow humans that have been lied and hurt by a system that is not set up to help us or doesnt care about us. Hell they lied to me for 25 years! I wish that the doctor that fixed your problem wouldnt mind having his name mentioned here where a lot of people might benefit from his talent. But that seems to be the case over and over again…its strange. I can’t even get someone who believes in PVPS to talk to me or another doctor on my behalf to help me. Just lucky i guess.


#52

Man I’m so sorry your dealing with this especially so late in the game. I’ll talk to my doc about giving his info or name. I’m just hesitant cause he works for Kaiser a major conglomerate and not sure how much help he is allowed to offer for someone outside of that practice. I’m not entirely against painkillers when your desperate. I was on tramadol and lyrica for some time and it literally made me crazy BUT it did bring the pain down a couple notches. For me though it’s a last resort. If I had no balls and still in pain I’d be on em.


#53

@thissucks …ya know it’s kimda funny that you say Kaiser. My wife and i were just saying tonight that maybe we should switch to Kaiser because this health care bill is killing “our happiness” almost as much as the PVPS is killing me! We just got our new bill amount starting next year and do you know what We’re going to be be paying a “month”? … 2350$ !!! for just the two of us for a Blue Shield PPO that feels a lot more like an HMO than a PPO! This is insane! The wheels have totally come off of our system. I like what Obahma was trying to do but “this” sucks. And the doctors are denying that they hurt me, the insurance wouldn’t pay for the reversal because they believe that people are lieing because they just want to have babies again when they get a reversal (a doctor told me that people try to get away with this all of the time! I couldn’t believe it …I can’t even think that low?) and “now” they’re threatening to take away the “only” medicine that works for me! My health care is more expensive than my house bill! This is the worst! i’m thinking of just getting catastrophic care health care , paying off the house and sticking the rest in a SEP or an annuity because i dont think that they can take those if you get sick and you have to declare bankruptcy. This is an awful system that we have hear now…and now the rich want more tax breaks! The freekin nerve! I’m sorry but this is all so draining I dont have time to look for an A1 surgeon. A flat tax and less money for defense would most likely fix all this but will it ever happen…nooooo! Sorry, getting political again. I just can’t belive the lieing (cover your ass country …that i used to be reallly proud of…has become! ) So to answer your question …i may be soon be Kaiser anyways. Thanks for letting me complain!


#54

I totally feel you man. Well if you make that switch I’ll connect you brother.


#55

@thissucks i had a post that was partially ment for you but i just posted it to the board called “so whats your story” imthink…but any medical professional who sincerely wants to help a very confused and scapel shy person with this particular problem…i’d be glad to talk to them via this board or via the phone. I’d appreciate it. Thanks mate. Later


#56

Hello @Vasregret but i saw that you wrote that you have cord pain. that is a big problem with me also. The vas cords feel tike they are about twice as thick as they should be, and they feel like they are very hard and sore if queezed. especially where they come out of the epi and for 2 to 3 inches past that…the strange thispng is that i should not even be feeling anything there because my reversal doctor “claimed” that he connected the vas to about the center of the epi, and it does not feel like i am feeling that! In any event the majority of my pain is where the testical shuttles the finished swimmers into the epididimus…do you have a lot of pain there? And if so do you know what people have done to aleveate it? I cant sleep its so sore now…they tell me to massage that area…fat lot of good that does.


#58

@Thissucks how are you doing?


#59

@Thissucks yeh man how are you doing? I used to work out heavy weight training. Do you feel like you can do that if you wanted to at this point?


#60

@thissucks Did they pull out the entire epididymis or only a part. I need to explain to my surgeon what to do, since I have identical the same story as you have. Also with a useless cord block…


#61

@derberlinersmurf

He had a bilateral inguinal orchiectomy - the spermatic cords, testicles, epididymis are all completely removed through incisions made in the groin.

Don’t ever do a scrotal removal. Bad idea, much lower success rates.