Progressive or not

Paso · Post by **Paso** » Thu Oct 20, 2005 6:26 pm

Hey Guys,

First off I want to say that I am feeling pretty ok these days (Knock on wood). What I am thinkimng about right now is if CPPS/IC usually is progressive in its nature. Take "IC" as an example. I know some guys here on the chatboard have IC or IC like symptoms but are doing pretty good (Mastcell and others). But I wonder how you guys feel about IC being progressive or not? Do you guys beleive it will progress and you will be worse 5 years from now or do you think you will stay/improve further on?

I know this is "wrong" thinking, but I need some input on this one.

Paso

gil_galad · Post by **gil_galad** » Thu Oct 20, 2005 7:25 pm

It's definetely getting better over time.

CppsDad · Post by **CppsDad** » Fri Oct 21, 2005 3:54 am

My symptoms have definitely progressed throughout the region. I've gone from minor IBS, to CPPS, to back pain, to major IBS. I don't think they are coincidental. I think it is just a symptom of chronic tension in the region, front, back, lower GI and upper GI. So, the pain has "progressed" I suppose. Where it stops next is anyone's guess. I suppose I need to work on things a little better!

Mike

Dj Smitty · Post by **Dj Smitty** » Sat Oct 22, 2005 3:15 am

gil_galad wrote:It's definetely getting better over time.

yep. I don't think I"m "better" but certainly better than I was in the first two months of having this. For me, and I'm still very new to this problem, things seem to be flattening out or levelling off at least. Certain pains are gone (golf ball, testicular) and other lesser pains (hypersensitive penis tip, burning perineum) at first are now the most annoying/distressing.

treynor33 · Post by **treynor33** » Sat Oct 22, 2005 12:18 pm

Mine got better after about 3 months, flattened out and stayed that way for about a year at about 85%. Then things took a turn for the worse again at about 16 months with new, different symptoms. The urgency and frequency never got bad again though. Only been running at about 75% for the last few months on the average. And like Mike, IBS became an issue too. Never let your guard down, if you do, it will come back to remind you...I'M STILL HERE!!!

Paso · Post by **Paso** » Sat Oct 22, 2005 5:36 pm

I can see that none of you that have replied in this thread but Djsmitty have IC like symptoms. I have been reading some on the news section here and found several mentions of IC being progressive. In Shoskes PPT as an example he mentions a study where 94 men with IC was evaluated. For the majority of these Men, their symptoms started with mild frequency and suprapubic burning. After a median of 2.5 years it became worse and turned in to severe frequency, urgency and bladder pain, manifesting itself as real full blown IC.

Personally I have had the suprapubic burning and mild frequency on and off now for a little more than 2 years. I wonder what awaits me...

Mast and others diagnosed with IC, how are you guys doing today, how long have you had it? Do you feel that it is progressive by nature?

This is really worrying and alarming information to me.

Paso

Paso · Post by **Paso** » Sat Oct 22, 2005 5:39 pm

Just saw DR shoskes replied in another thread. Maybe he could jump in here and give us some insight?

Post by **webslave** » Mon Oct 24, 2005 10:05 am

I think IC can be progressive if not interrupted. It can progress to a maximally bad state and then fluctuate, "wax and wane", but stay very bad. This is the typical picture of the poor patient who does everything wrong, has doctors who are clueless, and is genetically subject to high levels of anxiety, bad allergies, pelvic nerve damage and/or other exacerbating factors.

The purpose of this website is to prevent this sorry state developing.

Paso · Post by **Paso** » Mon Oct 24, 2005 11:59 am

Is your view that working with the PM, using TP, relaxation etc would prevent this horrible disease to progress further?

/Paso

Post by **webslave** » Mon Oct 24, 2005 9:01 pm

Yes, but you have to look at every possible thing that can help. For many, maybe most, relaxation, stress control, working on TrPs, etc will help. But I always suggest that people use quercetin as well (it helped me!), look at diet if necessary, and then also consider using one or more of the many other things that can help this condition (antihistamines, nerve calming medications, alpha blockers, etc). We are all biochemically unique, and each of us needs a unique approach to get on top of this condition.

scotsman · Post by **scotsman** » Tue Oct 25, 2005 9:05 am

One of the main problems with the wax and wane cycle is that I guess many people let their protocol slip, i.e. I've been fine for a couple months, life seems back to normal and I don't do as much PT or relaxation... then bang, it comes back.

You really have to commit to following a routine/protocol religiously and not slip back into bad habits.

Paso · Post by **Paso** » Tue Oct 25, 2005 9:28 am

I agree with that. I just need to work with my anxiety. Right now after reading up on suprapubic burning it seems to me that it all points at IC. There are very few people here on the boards with suprapubic burning it seems. So its hard for me to get any good advice regarding that specific symptom.

My biggest fear is what the future holds. I can live my life like it is today, but reading up on IC makes me beleive it will get way worse..

Paso

Dj Smitty · Post by **Dj Smitty** » Tue Oct 25, 2005 9:34 am

suprapubic burning means almost a burning sensation in the perineum, both the high end (just under testicles) and lower end towards the groin and rectum? I have that nearly all the time.....and it gets worse when I sit in certain chairs. I'm starting to wonder if I may have IC as well, because my bladder symtpoms have returned full force in the last 3 days with no apparent reason at all. I was doing so well with frequency and hesitation, but it's back with a vengance. Sometimes I just want to go to sleep and never wake up.

Paso · Post by **Paso** » Tue Oct 25, 2005 9:44 am

Dj,

I must have missunderstood something here. I was under the impression that suprapubic burning was a burning sensation just on or above the pubic bone. Meaning, lower abdomen?? It might just be my language skills are not good enough

I am swedish after all.

Pso

Dj Smitty · Post by **Dj Smitty** » Tue Oct 25, 2005 9:56 am

ok, then I"m wrong sorry. I sometimes fuddle these terms as I'm still a bit new to this problem. I don't really have any discomfort pain there, but I suspect I have a trigger point on the left side just above my penis because if I press down, it really hurts....also spots like that on my perineum/lower groin near rectum as well on both sides.

Any pain/discomfort I have there is when I get the occasional spell of not feeling like I've emptied my bladder well enough. I have it right now as we speak....I've urinted 4 times in the last 5 hours, so much difficulty getting it out, starting stopping, dribbling....then half hour later feeling the pressure of a full bladder. Just bloody awful.

I think eventually I might go see Dr. Shoskes.

UCPPS - Prostatitis, Interstitial Cystitis Forum

UCPPS - Prostatitis, Interstitial Cystitis Forum

Progressive or not

Progressive or not