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

[webslave]

Are you still seeing Bill? How did the gluten exclusion go? I noticed you drink beer a lot, and that's full of gluten too, did you know that? How often are you drinking alcohol nowadays?

[garyholc]

Hi

Yes still seeing Bill, saw him about a month ago now, and won't be able to see him now for another month. I dont drink beer anymore, too fattening and like you said, its not good for me. I only tend to drink red wine, but not very often anymore, usually two glasses on a Fri and Sat night but thats it, none in the week. I only drink herbal teas and water now, nothing fizzy, no fruit juices.

I tried avoiding foods with wheat for a month, but to be honest didn't notice any difference. I was tested for wheat intolerance a few years back when trying to find the cause of a stomach complaint (which was traced to a food additive - monosodium glutamate). I didn't however specifically try to avoid foods with gluten in it.

This feeling came on me about a week ago, nearly a year after it went. I was doing some internal PT work myself, focusing on the points high up near the prostate (can't remember names, lev. ani?)and the next day the frequency feeling came on. I wondered if maybe me prodding around had caused the feeling to come back, but I have tried most nights now focusing on the same areas but with no luck at getting rid of the sensation. Have also been doing work with my Theracane but I believe the points responsible for frequency are internal. Just wish I could switch it off, getting to sleep is a nightmare, though once I am asleep I dont awake.

I spoke to Bill on the phone last week about it and he suggested working on the muscles at the 1 and 11 o'clock positions internal, which I have been doing.....

[elitynski]

Gary - sorry about the step backward. It's so frustrating when you don't know what the triggers are. I guess this is just the waxing and waning I've heard so much about.

Take heart in the progress you've made and I believe that this too shall pass. Good luck!

[carld]

Gary,

Actually this is good news...You may need to continue hitting those spots at 1 and 11. Remember with internal work that you may flair and take steps back. I would focus on those spots carefully a couple of times a week.

BTW...don't worry about losing your Girl...That's catastrophic thinking and that alone can cause frequency with the stress that brings on....

[garyholc]

Hi Carl

Yeah I know, but its hard trying to be happy and go out and sit in the cinema etc, when down below you feel like something is about to leak out and you are bursting to go to the toilet. Then frustrating when next to nothing comes out! I hope you right about this being a flare, so far its lasted a week, I really want it to go soon. How is your frequency now by the way? Has it gone?

I just booked to go and see Bill again on the 30th July, it can't come soon enough. Just working it out, so far i've spent £600 on treatment, which includes flights, treatment, food in the airport, transport etc. not to mention the extras I have spent on a wand, Theracane, various herbal tablets, ED tablets etc. this is one costly condition to have.

Talking of tablets, I took a viagra on Sunday night, it worked, but also gave me bad side effects, such as feeling extremely sick, unable to sleep and the next day I came out in an itchy rash. Thankfully all gone now, but I won't be taking them again. Am seeing my doctor again on Friday to see if he can prescribe me Calias which worked much better. Once again though, no symptoms with regards chronic prostatitis / chronic pelvic pain syndrome while the viagra was working. Surely there has to be some treatment available bearing in mind these tablets seem to work for chronic prostatitis / chronic pelvic pain syndrome symptoms. Maybe a daily low dosage. Trouble is I know Calias is more expensive to purchase. Money, money money. I said it before and will say it again, the best cure for this condition is to win the lottery, never work, and live life in a relaxed state, lots of holidays, no worries about money etc.

[carld]

Hi Carl

I said it before and will say it again, the best cure for this condition is to win the lottery, never work, and live life in a relaxed state, lots of holidays, no worries about money etc.

Isn't that the truth...

As far as my frequency...or the feeling of having to pass urine soon after going...I'm at 95% to 98% and a lot of time 100% recovered....The days that I feel flaired or frequency kicks in...I know it's because of my diet and stress effecting my internal muscles etc...So do I think about CP/CPPS any more? The answere is yes every day...That is because I think of it as my marker to stay in a calm mind no matter how busy I get or how flaired I may feel...It is my reminder and I actually use that mind set to my advantage clearly in my recovery...

So can you...

[graeme]

yet in the book Dr Wise said it was when he was fortunate enough to be able to stop working that his symptoms got much worse

[garyholc]

Yeah I never understood that! Whenever I am not in work I feel better.

I can only assume he spent the time sat at home thinking about his conditon and thus making it worse...

[garyholc]

Well another day of hell - sitting in work trying not to pee myself. Did some TP work last night, and now just come out of a hot bath and did some more TP work while in the bath. I am seriously thinking of going to California. I either keep spending money on going to see Bill, or I pool my money and go feet first and go over there. I have just emailed Dr Wise for information on prices etc. Has anyone from the UK gone over? Where did they fly into, how did you transfer from airport to the clinics, where did you stay etc? A lot of money yes, but I'm not prepared to spend the rest of my life like this....

[graeme]

pm alprost for stanford details

[elitynski]

Gary - I'm sorry this has been so tough but let us know what you decide to do about the Stanford Clinic. I personally am holding off until I get my weight managed so I have a better look at what might be causing my issues.

However, with this recent flare I'm sure that you are trying to find the best comprehensive treatment. I talked to Dr. Wise recently and the cost for the clinic was around $3500 dollars and hotel / airfare are extra. I estimated that it would be about a $5k investment.

I'm keeping this open as an option for sure.

Good luck - I really believe you are going to find your way through this.

[garyholc]

Yeah its just under $4000. I'm not sure I can afford it, with my flights, accomodation, food, drink and transport I am prob going to be looking in excess of $5000 or in UK terms its going to be around £3,000. Ouch. Will have to weigh things up....

[graeme]

Gary without doubt Stanford is obviously the number one place to go, but even so it still will not be a quick fix and you will still have flare ups, along the way.

Just a question of thought!

[elitynski]

Graeme's comment raised a question for me.

So in Gary's case, where LUTS symptoms (frequency) are really an issue right now. How do you know that the SP is the right place for treating this as opposed to something like a Botox injection or an interstim.

For instance, if you go to the IC board, some of them would be talking about the interstim for frequency.

I was just curious??

[Jay]

How do you know that the SP is the right place for treating this as opposed to something like a Botox injection or an interstim.

The honest truth is that you don't know until you try. That's the reality of just about any medical treatment, though. If one thing doesn't work, you move on to the next.

Advantage of trying Stanford first is that, while you may be out some money, you'll not have been harmed if it doesn't do the trick. No injections, surgeries or otherwise permanently body-altering events happen there.