My Dear Friends...

[Rufus]

I came to this board after being part of another board which mainly relied on the theory that CP/CPPS is caused by an infection.

I'm not here to post anything about infection as I know how the board responds to posts that do.

What I am posting is my utter and complete disappointment in how the medical community is treating this problem.

A dear friend of mine, Frank [last name deleted by admin for privacy reasons] is close to his last rope and is thinking about "leaving Las Vegas".

It breaks my heart as not only as he's been through so much he has also been an inspiration to me and has helped me not give up.

Recently he has been doing great with his symptoms and attributes this to prostate drainage. Unable to find anyone in the Chicago area willing to perform drainage and seeking out the advice of a seasoned professional in CP/CPPS he decided to go to the Cleveland Clinic to get treated by Dr. Shoskes last week.

He had every blood, urine, semen test possible to rule out infection and was told to call today for the results.

The answer he got was that both he and his assistant went on vacation....

Frank went to the Cleveland Clinic with three other guys, all desperate and all having had spermatic cord denervation on either one or both sides.

Despite having had the surgery, they still endure pain either in their scrotum, surgical site, anus, perineum, and the tip of the penis. Not at the same time at least not typically since this condition seems to have a mind of its own and likes to visit different parts of our sexual anatomy depending on day. You never know where it's going to hurt on a day to day basis but it will hurt somewhere down there!!!!

They are all convinced that prostate drainage outlined by the Manila Protocol is their last hope and are considering going to Dr. Polacheck in Arizona to get prostate drainage as it is too costly to go to the Philippines.

I don't know what to think or to tell them.
I'm not a supporter of the Brad Hennenfent and Feliciano camp since there are no peer reviewed publications that support their research nor have I found anyone who has been cured by this method.


I believe that one day a "silver bullet" will be found for this condition. I mean, how can I just wake up one day with this with no warning, no signs and endure this insane condition with the prospect that it may be lingering as long as I live?

How is it we ( be you a believer in infection or not) all suffer the same symptoms and nobody seems able to figure what's really going on and come up with a cure that is 100% successful?

How is it that every imaging test reveals all in normal?

I hear stories about guys living with this condition for 5, 10, 15, 20, 30+ years and I find these men to be a source of inspiration yet at the same time the most tragic of figures.

I feel like I've been cheated and robbed of my life.
Frank like I and the rest of the poor guys I know all had productive lives.
We don't give a crap whats behind it.
All we want is to get our lives back, to live without pain and have all our thoughts focus free our genital/urinary tract.

How the hell is this so hard for the medical community to find a cure for this condition?

I don't think I'm crazy but my primary care physician seems to think so.

My urologist is trying very hard to help me in anyway he can and has run every test in the book but sometimes I feel that when he seems me as I walk into his office, there's always this look of sorrow on his face.

Perhaps he fears that I may one day leave from las vegas myself.
Maybe he feels bad that he can't help.

I just wish there was a sign, a glimmer of hope that the silver bullet is being worked on, that there is a cure on the horizon but all the research and all the time spent on the internet is that the only clinical research going on out there is the use of Lyrica for the GU pain....

Frank was doing so well and is now going through a mega flare up.

We all seem to have periods where the problem seems to flare and go to base line. Always back and forth from generally bad days to days to really really bad days.

I'd like to think that people get better but I'm not so sure.
My symptoms have changed.

First the pain was intolerable for many months and localized only in my scrotum.

In the fifth month my ass, not my perineum but the crack of my ass started to burn as though gasoline was poured on it and lit up with a match.

That has also simmered down in it's intensity but every time I walk run or am active in any way, the pain surfaces.

Just recently after my wife engage in oral sex the tip of my penis started to burn. After a year and one month I now have a burning sensation on the tip of my dick.

Again, I am not here in anyway shape or form to go against the policies of this board. I'm not saying this is an infection.

I truly don't know wtf this is but I have a hard time believing the tip of my dick burning has anything to do with muscle tension...

What does the future have in store for us?
I appeal to the Webslave or any experienced member who can shed light, glimmer of hope or any advice on what to do and what's to come.

[scoobysnacks]

I truly don't know wtf this is but I have a hard time believing the tip of my dick burnng has anything to do with muscle tension...

What does the future have in store for us?
I appeal to the Webslave or any experienced member who can shed light, glimmer of hope or any advice on what to do and what's to come.

I would first ask you for a full description of your symptoms? Obviously after sexual intercourse your symptoms flare or are made worse. A tell-tale sign of pelvic dysfunction.

You seem to be in the wrap up of catastrophic thinking, which only increases symptoms by keeping the sympathetic nervous system all fired up. We have all been there, but there is a silver bullet, as you put it, and I believe based on my recent successes over the past year, but more importantly past 3 weeks after going to Stanford, that it lies in the Stanford/Wise-Anderson Protocol.

You speak of burning in the rectum which is a tell-tale sign of trigger points in the rectum or striated sphincter muscle. I had this too. Notice I said, had this.

Tip if the penis pain, there are plenty of men here who have overcame that with trigger point release, both internal and external, stretching, warm baths, and generally relaxing the muscles. Trigger points in the lower abdomen and inside the pelvis can CERTAINLY cause tip of penis pain, and its quite common with CPPS.

I can tell you, and its not bragging, but I am MUCH MUCH more upbeat about this than you are. Because I shunned the medical community 2 years ago regarding this condition. I knew they had nothing to offer me, but guessed surgeries, tests that all showed no problems, etc and so forth.

I took control of my condition, studied, evaluated what worked and what doesnt. I embraced the Standford protocol, and over the past year I have seen symptoms drastically go down. I am not there yet, and maybe Ill never be 100% again, but I do have a weapon to control this thing, and as I improve each month I look forward to a productive life.

I would/and will never undergo a surgery in the "hopes" that is helps. They better be able to tell me 100% it will help, or they can keep that shit. I feel for those men you mention, but I believe if they keep seeking the help from the medical community in traditional terms, they are going to continue to feel hopeless.

Some men do improve with draining techniques, but I believe its because they are moving and loosening tight trigger points near and around the prostate, which in turn gives it room to breath again, and take in blood and oxygen that it vitally needs to be healthy. But, without proper evaluation of the pelvic floor and releasing all tight muscle bands, this will only be a quick fix. Its at that point I would caution pushing on that organ over and over again for only temporary relief. I think there are better ways to restore the pelvis to its original open and relaxed condition, and I'm sticking with my method.

good luck,

SS

[scotsman]

I've think I've yet to come across a forum member/sufferer who hasn't seen significant improvement from following the protocols discussed on this site (relaxation, stretching, physiotherapy, trigger-point work, supplements, etc). The people who don't improve following this path either don't stick at it or only pick and choose what parts they want to try out. I agree with Scoobysnacks in that there is a silver bullet but it takes dedication and time to work. I now have days when I'm virtually symptom free - but that didn't happen by itself.

A 'single' magic silver bullet pill would be nice - I know that I'd rather have been cured after a couple days then having to spend almost 4 years of daily dedication to beating this thing. But we are where we are and whilst we're doing our best to educate the medical community regarding our condition we have to do more than sit back and let this illness beat us.

I truly don't know wtf this is but I have a hard time believing the tip of my dick burning has anything to do with muscle tension

This sentence here says it all to me. Until you start believing or accepting that muscle tension/dysfunction can cause these symptoms then you're never going to start on the road to recovery. I honestly can't understand why you find this concept so hard to grasp? Don't you read the posts from other members here? Do you think we're all making it up?

I actually find myself getting cross reading posts like yours, not because I don't empathise with you, but because I want you to get better and I feel frustrated that I can't help you 'see' the way forward.

I wish you well.

Richard.

[ectobia]

just keep reading the messages on this board
i'm sure you'll get better in time just give it time before you consider something you might regret again

[Rufus]

I promise you all I'm going to find one of the PT mentioned here on this board. I have nothing to lose and from what I understand, everything to gain.

Richard,

I'm not trying to be hard headed, it's just that I'm a bit hard headed and the notion of tip of penis and trigger points seem at odd ends of the spectrum but I promise you that I will make an appointment and hope that I will find the relief you guys speak of in 07'.

Ectobia,

What do you mean in you post?
I didn't have spermatic cord denervation.
This condition may have certainly made me a bit nutty but I'm not crazy...

[scotsman]

Richard,

I'm not trying to be hard headed, it's just that I'm a bit hard headed and the notion of tip of penis and trigger points seem at odd ends of the spectrum but I promise you that I will make an appointment and hope that I will find the relief you guys speak of in 07'.

I've had direct experience of getting internal triggerpoint work done that caused shooting and burning pains up the shaft and onto the tip of my penis.

Richard.

[Rufus]

I really appreciate the adivce.

I just spoke to a therapist who advised me to read A HEADACHE IN THE PELVIS and help me find a way for my insurance to cover the expenses.

[Sleeper Service]

Read the success stories posted by AlChicago and Dell. They sound quite similar to your symptoms and they got better.

[rider fan]

I truly don't know wtf this is but I have a hard time believing the tip of my dick burnng has anything to do with muscle tension...

I had tingling sensations (not painful, but annoying) in the tip of my penis for months. This symptom was helped by stretching and Elavil.

[ectobia]

what I mean is that anxiety is a real thing, it can cause you to think you have something wrong with you that you don't, thats something everyone experiences in their lifetime. you sounded so worried in your post I thought that was something you were going thru currently, but since you said its not now I can tell that.

[CppsDad]

I'm not trying to be hard headed, it's just that I'm a bit hard headed and the notion of tip of penis and trigger points seem at odd ends of the spectrum

I can press on trigger points on my abdomen can create pain in both the tip of penis AND the anus at the same time, and sometimes my back as well. You may not be able to recreate those symptoms, but if that doesn't demonstrate that the nerves in the region are all inter-related, I don't know what will. It doesn't make sense, but that's the way it is. Neck strains can give you head-aches right above the forehead, and those nerves are no closer to each other than the ones in your perineum and penis, or abdomen and penis.

How is it we ( be you a believer in infection or not) all suffer the same symptoms and nobody seems able to figure whats really going on and come up with a cure that is 100% successful?

I think because the solution is hard. There is no "cure". There is rehabilitation. Nobody every said that rehabbing from a torn ACL is a "cure". It's just physical therapy.

And what is really going on is a LOT of things. chronic prostatitis / chronic pelvic pain syndrome covers a lot of ground in the pelvic region, just as a "back injury" covers about 5 square feet of room. There are a lot of things that can go wrong and cause problems in the region, and many of us have completely different problems but very similar causes and symptoms.

While you are waiting for a PT appointment (or waiting to be committed to going or waiting for insurance help which may or may not come), try giving the SP a try on your own. Start the relaxation. Start stretching vigorously. And start doing external massage as much as you can. This is ALL free, and may help you tremendously. And don't give up for at least 6-12 months. Don't cheat yourself and give up early! And, after that, if you haven't tried PT, you CAN'T say this didn't work. You need all the phases recommended in AHIP. That's because you don't know which ones will help, and you can't afford to not do any of them. They may all be necessary in your case, or not.

Mike

[webslave]

Great post above by Mike, and all the other posters too.

What I am posting is my utter and complete disappointment in how the medical community is treating this problem.

Agreed. They have failed miserably in treating us, with one or two exceptions: Shoskes for his work on phytotherapy, Nickel et al for their honest assessment of antibiotics and other treatments (none of which work very well, as they now admit), Anderson for his work with Wise. There are also others in the IC field.

A dear friend of mine, Frank [last name deleted by admin for privacy reasons] is close to his last rope and is thinking about "leaving Las Vegas".

No full names please. Yes, suicide is a real threat without proper treatment.

Recently he has been doing great with his symptoms and attributes this to prostate drainage.

"Prostate drainage" involves massaging the prostate and the immediately surrounding muscle/muscle insertions, especially the levator ani. It's the latter that helps, because mashing the prostate is a waste of time.

The answer he got was that both he [Dr Shoskes] and his assistant went on vacation....

Probably a well-deserved break!

Despite having had the surgery, they still endure pain either in their scrotum, surgical site, anus, perineum, and the tip of the penis.

If you operate for pain, you get pain.

They are all convinced that prostate drainage outlined by the Manila Protocol is their last hope and are considering going to Dr. Polacheck in Arizona to get prostate drainage as it is too costly to go to the Philippines.

Total waste of money! Tell them to join this forum instead. I can't believe men are still going to Tucson.

I don't know what to think or to tell them.
I'm not a supporter of the Brad Hennenfent and Feliciano camp since there are no peer reviewed publications that support their research nor have I found anyone who has been cured by this method.

The things I could tell you ... but I don't want to be sued, so just take my word for it: their method is total BS.

I believe that one day a "silver bullet" will be found for this condition.

I don't.

I mean, how can I just wake up one day with this with no warning, no signs and endure this insane condition with the prospect that it may be lingering as long as I live?

You can ask the same about many conditions. The truth is that your body was working up to this for a long time.

How is it we ( be you a believer in infection or not) all suffer the same symptoms and nobody seems able to figure what's really going on and come up with a cure that is 100% successful?

There are a host of diseases and conditions about which the medical community knows little, and where a 100% successful cure is lacking.

How is it that every imaging test reveals all in normal?

Very few conditions and diseases, especially nerve-related conditions, are visible with imaging technology.

Perhaps he fears that I may one day leave from las vegas myself. Maybe he feels bad that he can't help.

Yes, and yes. Time to leave the poor guy alone, for he cannot help you. It's in your hands.

[Rufus]

Regarding a cure for this condtion; I would NEVER say "never", rather that the odds are not in our favor.

Science is rapidly breaking ground in many fields and coming up with new therapies that were impossible to imagine years ago.

I put my faith in science.
Time will tell if I'm wrong.

[scotsman]

I put my faith in science.
Time will tell if I'm wrong.

I don't think anyone can say that there NEVER will be a cure for this condition in the future - but I think you'll be waiting a very very long time! i.e. 20+ years at least.

Richard.

[ectobia]

I agree with scotsman