UCPPS - Prostatitis, Interstitial Cystitis Forum

I think it's been a year since I last posted. Funny to think just 7 years ago I was on here 24 hours a day. Those days still make me shudder.

Anyway, I'm doing ok. Still at 80-90%. Rarely have bad flare ups now. Still use donut cushion religiously. I truly believe it helps the most of anything. I have 3.

I still have a discomfort down there and some urinary issues, but I can live with them.

Life returned to normal eventually. Well, almost. Funny what becomes "normal" after a wretched Hellish experience like 2-3 years of brutal CPPS.

Special shout out to Mark and Shoskes...is Dimitrikov still around? Word up to all you old schoolers. Ciao for now.

Dave (rhemium) never did the Stanford/Wise-Anderson Protocol or any other specific thing, as fas as I can remember, besides Quercetin. Is that right, Dave?

Rhemium, so nice to hear from you. I am also one of the "old schoolers". Back in the google site days when the Miami protocol(sit in a hot bucket of water for 30 minutes) was all we had. I am also about 80% and can live with it. I am also full strength, playing golf twice a week and really don't have any restrictions. Back in 2001 I wish I had known what we know today. It would have been so much more bearable. I eventually did the SP and still do the stretches and relaxation I learned from the PT. Glad you are doing well.

No, I never did the Stanford/Wise-Anderson Protocol. It was sort of a new theory about the time mine burned out.

I used any accredited quercetin product for awhile back in the day, but it was during a time when my chronic prostatitis / chronic pelvic pain syndrome was so bad and so inflamed NOTHING was going to help. I did the broccoli broth for quite awhile too. All the quercetin surely didn't hurt.

But I think sitting on the donut cushion and avoiding constipation are my primary ways of minimizing symptoms.

The rigorous massages helped a lot too.

It was a dark time for me and I always felt a little guilty for abandoning the group. But I'll check in from time to time.

Well good to read this post. I am on this board for several hours a day. Given my bed ridden position this is all I can do for hope. Good to know though that the condition does heal.

6 weeks with little pain for me. Best period in 2 and a half years of this. I'm seeing like a lot of men this thing calm down in time if you do the right things

Mine burned out in about 3 years. For the past 6 years I've been at 80% or so. Life returned to normal, glad to say.

Hope you all get well soon.

If you want better than 80%, you may have to do more. This doesn't go completely away by itself, unfortunately.

when I first got this in 1993 mine burnt out 3 years later without treatment to the point where I was 100% pain free !

It returned in 2000 and I'm now at 60 % better

Ok veterans I'm just starting out, and hoping it doesnt get worse. Would SP help with frequency and pain in urethra? I am taking saw palmetto, quercetin and pretty strict diet, any more suggestions? I am going to order any accredited quercetin product too. Really encouraging to know I could get better. Hope you guys stick around and pass on the wisdom. thanks

calguy wrote:Ok veterans I'm just starting out, and hoping it doesnt get worse. Would SP help with frequency and pain in urethra? I am taking saw palmetto, quercetin and pretty strict diet, any more suggestions? I am going to order any accredited quercetin product too. Really encouraging to know I could get better. Hope you guys stick around and pass on the wisdom. thanks

Internal tight muscles are at the root of my frequency. So getting your pelvic floor worked on by a PT familiar with this is key. Then learning to do it yourself.

Go back and read the what is pelvic myoneuropathy? under webslaves signature.

You just have to let go and understand this does not go away by itself because you are causing this. Not some micro-organism or bacteria that's made a home in your prostate.

Consider 10mg of Elavil to help with this as well. Ask your doctor.

Try Prelief also to ensure your urine acidity is balanced (7.0). You can get urine pH test strips to check this in the morning when you pee for the first time.

--mb

I would caution that Elavil can cause contipation as a side effect. Even at a small dose it was problematic for me.

Nothing irritates me more than constipation and/or sitting w/o a donut cushion.

If I avoid the above I barely ever notice my problem.

Rhemium wrote:I would caution that Elavil can cause contipation as a side effect. Even at a small dose it was problematic for me.

Nothing irritates me more than constipation and/or sitting w/o a donut cushion.

If I avoid the above I barely ever notice my problem.

Totally agree with you. I spent a day sitting on a hard chair at work this week and it gave me problems. Who would think that a one off, 8 hour event could give that little extra push back into the discomfort zone?

Rhemium did you suffer with frequency problems and feeling you needed the loo more often than you did?