Need to get this off my chest (Garyholc's Case)

[strobers]

Gary, relax, slow yourself down. I really think you should get yourself on some anxiety medication. Anxiety is what IS going to make you worse. You have to get yourself together emotionally before anything else.

A few days/weeks/months from now, we don't know because we are not in control of anything in our lives. I'll amend that statement. We are not in control of anything other than our reaction to adversity; you will be in a different state of mind spirtually, emotionally and physically.

Hang onto and assimilate this. Nobody is in control of anything. Life is a big crap shoot and hopefully on the next toss of the die we won't crap out. The only thing you can control is how you react to what is going on in your life.

[mbaker]

Gary,
Trust me, re-read Webslave's posts to you and relax a bit. Go see your doc and get a script for some Elavil 10mg and take it. If you are really stressing during the day, get a script for some short term Xanax. Stress, end-of-the-world thinking makes chronic prostatitis / chronic pelvic pain syndrome much worse. It's something we all have to caution each other about. Especially when you have flares. Get a script for some Ultracet also for when the pain is bad. Just having it on hand can make you relax as you know you can take the pain down at any time you want.

But again, Webslave, Scooby, etc have been dealing with this thing a long time. Listen to what they're telling you.

--mb

[ramana]

1. that the pain is going to get much worse, constant, and like others on here, my life will be spent laying on the couch living on painkillers with no social life, not able to go to work, and just existing rather than living
2. that because of the above, I won't be able to hold down my new job, will lose it, lose my house, and end up very poor, in pain, on my own somewhere
3. because of the ed issues, I will always be single from now on and unable to hold down a relationship ever again - plus of course the down days I have will impact the relationship
4. won't be able to go out walking like I used to, or plan holidays or weekends away with friends because of being too afraid of that pain again
5. that overall, this thing has put an early end to the rest of my life, and that things I should be looking forward to doing in the future and now in the prime of my life, I cannot look forward to anymore. Its just going to become an existance rather than living - thats what I am really afraid of....

Actually I know a person in UK who has gone through 1 - 4 (except he does not take strong painkillers though and he is not yet that poor). He is much more optimistic than I am. And he has less anxiety than me. Somehow things work out. Two years ago, had I known that I will be on bed for months, or went on disability and discovered infidelity on the same day, I would have gone insane. Yet I am still here, going through a divorce, somehow managing to work from bed and trying to find a cure. The fear of nightmare appear to be more harmful than the nightmare itself. Maybe working with less privileged people will help to put things in perspective. I don't mean to preach since I have all of these thoughts / symptoms myself. It is just so that today I have reduced pain and so I can see the situation in a different way. Good luck

[garyholc]

Ramana - this person you speak about - did he go through all this because of Prostatitis? As for your divorce, was this because of the CPPS?


Went to my doctors this morning. Told him about the ED issues. Says there wasn't any direct link between Prostatitis and ED - but I have seen documents which say there are. Anyway, he has taken blood to check my hormone and testosterone levels. Then spoke about the pain I had on Monday. He has given me 50mg Tramadol tablets to take when the pain flares up again - though I have had no guidance on how to use these, so some help here would be appreciated. Finally, asked him about the Reiter's syndrome stuff, and he didn't really seem too interested on it, only to say the eye infection would have lasted longer.

So overall, not really a productive morning. Oh yeah, anti anxiety/depression tablets he wasn't too keen to prescribe.. Pain today is in my lower buttocks, feels very tight and sore like I've been sat on a hard floor all night.

Edit : Just found the page about wheat and its ability to start a flare. This is interesting because on Thursday last week I bought some cereal and have had this for breakfast every morning, including that Monday morning, but stopped since then. I don't normally eat cereal, I just thought I would give this one a go..... I haven't eaten anymore since, I wonder if this was the cause of that flare on Monday...

[graeme]

Basically you can take up to 400mg a day in separate doses. I found 100mg was need to touch the pain. You take it 3 times a day normally maybe 100mg in morning 50mg afternoon the 100mg of a night.

If 50mg dose dont work phone doc and ask if ok to up it

If still no good try Solpadol works better for me

Read scotsmans posts on his tramadol dosing in this thread in the success forum

[ramana]

This person you speak about - did he go through all this because of Prostatitis?

Absolutely. In fact there are members on this board who have gone through similar issues. I don't know if it is appropriate to bring up their specific member handles.

As for your divorce, was this because of the CPPS?

The answer is pretty complex I think. However, I can safely say that at least it could have been postponed were it not for a full month of intense pain that just put me a room all by myself.

[garyholc]

Well if I went through 1 - 4 on my list I dont think I would like to "exist" anymore. Doesnt sound like much of a life to me.

[HelpADude]

Gary, every bad thought you wrote here went through my mind as well and I'm sure many other went through that as well. I'm still here. After the initial rollercoaster of about 6 months, now I'm settled into minor flares that comes and goes and I really don't freak out anymore.

Wish I have a word of wisdom for you but I don't. I know the feeling, been there when I laying on the bed out of breath with all the worst outcome flashing through my mind. Try live your life in the present. I always try to remember the story about the guy and the two tiger from the book, Everyday Zen.

A guy was chased by a tiger off a cliff, he hangs on the side of cliff off a tree root, to make things worse, another tiger shows up below the cliff face waiting for him to fall while the other tiger waits above. There's little doubt regarding the man's fate. At that moment he notice a ripe wild berry within the arm's reach. Without hesistation, he reached over with one hand and pick the berry, it was delicious. Now, that living in the moment.

[webslave]

I like that

[garyholc]

A guy was chased by a tiger off a cliff, he hangs on the side of cliff off a tree root, to make things worse, another tiger shows up below the cliff face waiting for him to fall while the other tiger waits above. There's little doubt regarding the man's fate. At that moment he notice a ripe wild berry within the arm's reach. Without hesistation, he reached over with one hand and pick the berry, it was delicious. Now, that living in the moment.

Lol... and the bit you didn't paste said

"Next thing, the root snaps sending the man hurtling to the ground. More tigers have appeared. One tears off his arm, the other a leg. Another tiger bits off his penis." however if I think along Zen lines here, the man should say ".. well, at least that has made the pain in the tip of my penis disappear...." right?? :)

[Rufus]

Feel like going to six flags and get out of the car during the safari portion of the park...

[webslave]

Garyholc and Rufus, you are both missing the point of the importance of living in the NOW and not constantly living with your head full of WHAT IFS. People who catastophize are always thinking about the future. Both of you are very guilty of that. For most of my life, I have been guilty of this too, so I know how it can damage a life.

[garyholc]

Well the day had come, I flew up to Edinburgh this morning, waited around the airport all morning, and finally got to meet Bill Taylor at midday. Those who say he is a nice guy and really puts you at ease is correct, he said he has been treating people with these complaints now for over 20 years, and says people do tend to disappear over time as they get over the condition and then a new wave of people emerge, such as now he mentioned!!!

Anyway, the external trigger points didn't do much for me, but I was AMAZED at just how hard and deep you have to press to find the buggers. There was a slight uncomfortable moment on my left side just under my ribs but nothing really referred the pain I had been getting of late.

That was until the internal PT work. Now guys, why didn't you warn me just how painful this was I was literally lifting off the table from the pain of it - the only way I could describe the pain was as if someone had just opened up a raw wound and was putting salt in it. Jesus!!! But they did refer my symptoms, the need to urinate, pain down my legs, pain in the shaft of my penis and also the extreme pain I had been getting when I went for a walk 2 weeks ago. He thinks this is due to a muscle compressing on the pudendal nerve or whatever its called.

Anyway, I have never felt something so uncomfortable or painful in all my life!!!! After the first 10 mins he gave me a break. I started getting a shooting pain in my left testicle. He came back in and I told him, and little bit more PT again agonising, and it had gone. Amazing.

I left feeling very loose, lighter, and on top of the world. I got to the airport, unafraid to walk far, just wanting to stand on a table and shout "look at me, I feel normal". Its the first time I have felt normal for ages, and I felt very emotional with it. I celebrated with a nice pint and sat around for another 2 hours waiting for my flight. Now sitting at home, I feel some discomfort in my rear, but I guess this is to be expected after the work I had done today.

Bill has estimated it would take me around a year to get over this, but he does stress this thing can be fixed. My left side for some reason seems to be worse than my right, and Bill has shown me some techniques and breathing methods to do until my next visit, which I think will be in around 2 months time, due to me changing jobs.

Writing this, considering how low I have felt of late, I feel like at last someone has shown me a light at the end of the tunnel and that there is a way out of this thing. To feel normal again just felt so fantastic, I wish it would last now forever but know that shortly I will get those tense feelings again, but I do feel much more loose. I haven't needed any pain killers, and Bill mentioned a glass or red wine is a great muscle relaxant when I get home, so I am just having a glass now before having a nice hot bath. Although a long day, and at times very painful, it has been totally worth it, I just wanted to cry in the airport from release of emotions of feeling so much better.

I found Bill to be a very understanding person, easy to talk to, knows his stuff and does care about the people he see's (he wants me to ring him back tomorrow to tell him how I am feeling). It is a pity there are not more people like him scattered up and down the UK it really is, and given how busy this guy is in his clinic, I think its really good of him to devote the time he does to chronic prostatitis / chronic pelvic pain syndrome patients.

Oh yeah, on the ED issue I did speak to him about this, and he did explain to me with the help of diagrams how the muscles are responsible for this, in particular how one of them isn't shutting off the blood supply to the penis properly in order to stop the blood flowing back out again too quickly. He says this will better with PT over time. Funny thing is, and god knows why, but after the PT session and time to recover, I felt very horny!!! lol. Bill did say however to keep having sex or masturbating if possible, not too often, but do it in order to keep blood flowing to these muscles and to get the muscles used.

[scotsman]

Great write up and delighted that you've had such a positive experience. Yes, the old salt into a raw wound is a familiar feeling

I'm also glad that you are prepared for the symptoms to return as this isn't a quick fix solution - however, you now know that this is fixable long term and that lifts the weight of the world of your shoulders.

Keep us updated with progress please

Richard.

[garyholc]

Please tell me that "salt in the wound" feeling goes eventually!!!! It was as much as I could do to bear it. Plus, the worst feeling of the lot - pulling the finger out, felt like my insides were coming out with it. Not pleasant!!! Yes will keep you up to date with progress. Am I right in assuming you went to see Bill? If so, for how long for, how many sessions?