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 surgery? 
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Joined: Thu Jun 15, 2017 8:17 pm
Posts: 17
Post surgery?
Hi there

I have read a number of pages, I am wondering... on this forum appears to be tonnes of guys that suffer. I read about guys here 5 years 10 years still in pain cant sleep and what not. Is surgery not an option? for those I would assume that cannot find comfort of some sort after years and years... would you not seek out the next step?


Thu Jun 15, 2017 9:52 pm
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Joined: Sun Oct 16, 2016 9:59 pm
Posts: 117
Post Re: surgery?
A lot of guys walking into an operating room for prostatectomy will never be able to have sex again. The rate of lasting impotence varies, depending on where you look, but the odds of regaining completely normal sexual function aren't all that rosy.

I work as a surgical tech, & we have a saying: "When in doubt, take it out... Unless it's your own, then leave it alone!"

_________________
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth
Sherlock Holmes


Fri Jun 16, 2017 12:58 am
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Joined: Thu Jun 15, 2017 8:17 pm
Posts: 17
Post Re: surgery?
I domt doubt it... but if pain is prolific then how do you live

Ive been talking to a guy who was i chronic pain and he ten yrs on has had a kid and said his sex life waa great and hes pain free... i talk to him on facebook. Searched him.oit feom a testimonial

Just saying if the pain is brutal all day every day then what option do you have. Cant live on morphine every day


Fri Jun 16, 2017 2:05 am
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Joined: Thu Jun 15, 2017 8:17 pm
Posts: 17
Post Re: surgery?
So youd never do it even if your pain was incredibly bad


Fri Jun 16, 2017 2:15 am
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Joined: Fri May 08, 2015 2:59 pm
Posts: 663
Post Re: surgery?
The fact the medical institute still are doing this for some people, and some doctors advocate it, goes to show how inept they are in treating this disease. There are other options.


Fri Jun 16, 2017 5:20 am
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: surgery?
Might want to look into a spinal stim unit if pain is that bad. When it comes to CP/CPPS there's not even any guarantee that surgery will eliminate the pain (wonder how satch is doing?). You could remove the prostate and have phantom pain, increased nerve pain due to nerve damage from surgery, or even come to find out that the prostate wasn't the source of your pain to begin with...and still be in pain yet not be able to get an erection or orgasm ever again!

Most people over the years seem to find ways to cope with it or make lifestyle changes to minimize it. That's where I am now. I've basically given up masturbation and do nightly prostate massage and mine is pretty tolerable day to day. I'm getting set up to do a trial on a spinal stim unit as that looks like a very promising option for the pain that doesn't require any medications.


Fri Jun 16, 2017 8:54 am
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Joined: Thu Jun 15, 2017 8:17 pm
Posts: 17
Post Re: surgery?
Yea i guess its well no i know its a huge risk i just thought some guys on here are in so much pain that the choice is to try and get their life back versus if nothing else works.

I talked to a guy on facebook who had it done and he was particularly bad and its 10 yrs on and hes totally pain free and living life. Guess theres always good outcomes and bad.

But i do get that for others if its not your prostate thats the issue.

What is stem trials please?


Fri Jun 16, 2017 3:42 pm
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Joined: Thu Jun 15, 2017 8:17 pm
Posts: 17
Post Re: surgery?
Was also wondering if any guys on here benefitted from pt therapy. Watched a guy on youtube raining at 33 and hes talked about his pt and prostatitis. He doesnt appear to be paid by the stanford pritocol.

I have huge anxiety issues and that hasnt helped. I also run alot and noticed that running hills and the truncation of my back makes the issue worse. I never used to have pain though... it was 8 weeks of something else then the last week the prostate flared. Had tests done


Fri Jun 16, 2017 4:10 pm
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Joined: Sun May 01, 2016 9:48 am
Posts: 647
Post Re: surgery?
1. I benefitted hugely from PT, in fact I think it's the only thing that keeps me sane form day to day. I just went to a PT specialist for a couple months and then picked up on what she was doing and eventually just started doing it myself daily to save huge time and money. Eventually I fine tuned to figure out what worked best for me. I've settled on a simple daily light prostate massage, I don't even mess with the pelvic floor muscles anymore. I recommend getting in to see a good PT and then steal all their tricks and just do it yourself. Once you get over the finger up the but it's insanely easy and actually rather interesting to "learn" what's really going on with the various muscles and organs up inside there.

2. Spinal stim is an electrode that gets implanted up along your spine and generates a HF signal that dampens the pain signal that travels up your nerves to your brain. It won't cure your CP (but then again after two years nothing has cured mine anyway) but there is a good chance it can reduce or almost eliminate the associated pain. I am going to move forward with the trial process to see if it helps, and if it does then I'll get a permanent unit implanted later this year. You'll need to see a pain management specialist to learn more about these things. It's a rather easy process though, and the surgery is pretty non-invasive. Or so it's advertised! I'll be reporting back if/when I go through with it.


Fri Jun 16, 2017 8:37 pm
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Joined: Thu Jun 15, 2017 8:17 pm
Posts: 17
Post Re: surgery?
cool will check out a PT. not sure here in nz if there is any specific pelvic therapist however who will do trigger point rectally

how are you 454 are you able to still function every day?


Fri Jun 16, 2017 10:24 pm
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Joined: Sat Jul 16, 2016 11:49 am
Posts: 123
Post Re: surgery?
When this all started for me it was a life changing event. My symptoms were so terrible that life was unenjoyable and my days were filled with just trying to get by. I missed 3-4 months of work. Testicle pain, lower abdominal pain, flank and back pain, urethritis, etc. Everything I read that referenced percentage of people who recovered was around 70%. My doctor in Cleveland told me he thought it was about 80% that recovered. Nobody would ever really talk about the 20%-30% of people that don't recover.

People generally skirt around answering what someone should do if they have been trying everything and still continue to be in the same misery after 4-5 or even 6 years later. I don't think anyone really has an answer.

I actually contacted a surgeon and got some reassurance that he would examine me and discuss a "Plan B" in the event I ended up in that 20%-30% group. My plan was to try everything and if nothing worked and life remained unenjoyable and miserable then I was going to move in a different direction.

I'm not saying that is the right move and I can't recommend it to anyone else because a person has to decide for themselves what steps they are willing to take when dealing with this disease and everyones experiences and symptoms are different.

I look at surgery as another tool that might be a good option in my case and I don't want to be denied the option to decide for myself. I have no plan to spend the rest of my life in the misery I was in before. I'm much better now but I'm not sure what's going to happen for me in the future. I do know that I want every tool available to me.

There is a study of 4 men in California that had surgery because they been plagued with chronic pelvic pain and chronic prostatitis for years relating and were very happy with the results. All men were cured completely of prostatitis and chronic pelvic pain. There aren't many of these studies and there really aren't any good numbers on success rate percentages because there are really only a handful of cases that can be found. All of the ones that I have been able to find have positive results for the most part. There just isn't enough info. on the subject and I'm still not sure why.


Fri Jun 23, 2017 2:07 pm
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Joined: Sat Jul 16, 2016 11:49 am
Posts: 123
Post Re: surgery?
This is the study.
http://prostatitis.org/redirect.php?lin ... MC4970398/


Fri Jun 23, 2017 2:15 pm
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Joined: Tue Jun 20, 2017 5:57 pm
Posts: 33
Post Re: surgery?
if your problem is bacterial, take antibiotics until the infection clears and then use condoms.
if your problem is muscular, pelvic floor physical therapy including myofacial trigger point release might help.
antibiotics followed by low dose elavil and regularly working out / doing stretches i learned in PT worked for me for several years until i seemingly got enterococcus faecalis in my prostate again, though i have still not determined this to be a pathogen as opposed to normal flora.
surgery should only be considered after you make a huge effort to try to get better by all other means possible.


Fri Jun 23, 2017 2:44 pm
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Joined: Sat Jul 16, 2016 11:49 am
Posts: 123
Post Re: surgery?
I could not agree with you more.

These are all things that everyone is trying in order to get rid of this thing.

I think the question is what if nothing works?

What if you try everything and nothing changes?

What if you are one of the few unlucky ones that can find no relief no matter what you try?

Then what do you do besides trying the same things over and over again?


Fri Jun 23, 2017 2:55 pm
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Joined: Tue Jun 20, 2017 5:57 pm
Posts: 33
Post Re: surgery?
What worked for me seems to be before I relapsed.
After tons of antibiotics, a month of LevaQuin....though this may NOT have actually been the trick - AND I suspect it caused serious long term side effects.
***2 months of low dose elavil.
Regular workouts at the gym.
Vitamin d. (D3, I think)
Regular stretching taught at pelvic floor PT.
Kegel holds for 10 seconds, relax for 20. However, when I relapsed, I tried this and it did nothing positive. May have just made things worse. It's suggested by some doctors NOT to do kegels, so only do this if you find a urologist who believes this will help. I think it helped me because I had gotten used to not exercising my kegels at all and my kegels forgot how to behave.
Also, pee sitting down and don't do anything that may cause you to tighten your pelvic floor muscles before or during your pee.
Think positively. Relax and eliminate catastrophic thinking.
I'm getting ready to try fosfomycin and elavil though I may just do the elavil.


Sat Jun 24, 2017 9:21 am
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