Progressive or not

[webslave]

Paso, I have seen/heard nothing to suggest that "IC" (really just pelvic myoneuropathy centred on the bladder) is any more intractable or progressive than PM centred on any other part of the genitourinary tract.

Don't believe the horror stories, and don't read too many female IC forums. The women have a flair for self-dramatization and melodrama.

And to further confuse things, there is a rare disorder called eosinophilic cystitis that is very serious, and often gets confused with IC, engendering panic.

[Paso]

I guess you are right. Its just that both Dr Anderson at Stanford said in an interview back in 2002 on ICN that suprapubic pain is the most common symptom in men with IC. There are many other articles confirming this. Since I have not heard of any one on this site with that particular problem besides me I just start to wonder...

[webslave]

Its just that both Dr Anderson at Stanford said in an interview back in 2002 on ICN that suprapubic pain is the most common symptom in men with IC.

It is. So what? Nothing I said contradicts that.

[Paso]

I know. I just dont want that diagnose....I have not read about many IC:ers living a normal life longterm...Thats all Mark, I am scared...

[webslave]

In 1991 my uro said that he could see via cystoscopy that I had an inflamed lower bladder, bladder neck and prostatic urethra. Today I have no pain, at all.

With this condition, nothing is a death sentence. I was in such severe pain in those days that I could hardly walk.

[cppsyoungsufferer]

In 1991 my uro said that he could see via cystoscopy that I had an inflamed lower bladder, bladder neck and prostatic urethra. Today I have no pain, at all.

With this condition, nothing is a death sentence. I was in such severe pain in those days that I could hardly walk.

so what ultimatly helped you?

[Ginty]

Hi Paso,

I know what you mean about being scared of the diagnoses.
The worst thing for me about this condition is the anxiety/depression and general fear of dying that it has instilled in me.
I don't exactly conform to the general group of symptoms that most on this board seem to have. I have cloudy urine, sore kidneys at times and sore glands, all of which are not often mentioned here.
I often wish that I have "classic prostatitis" if such a thing exists and I dwell and worry about these other things, which in my mind anyway, seem more serious and have more chance of killing me off.

However what I can say is that my frame of mind was a lot worse a year or so ago.
I can clearly remember having one realisation that made me feel better though and that is "You only have one life, this is it, this is the body you have been given. It may never get better accept that".
That might sound harsh and is quite a scary thought at first, but when I really thought about that I found that a lot of my fear and anxiety was because of lack of acceptance of my condition.

But when you accept that this is it, this is the situation you've been given, you don't worry about it as much.
It sounds daft, it's paradoxical, and many will read this and think that it is a defeatest attitude.
But trust me, I feel better just writing it.

I'm not saying give up all hope of being better, but if you refuse to accept the situation it is then that the mental turmoil and worry really comes to the front of your mind.

I guess it's because there is a conflict between the reality of your body and the reality in your mind.
This in turn puts focus on your sore body, probably makes you tense up, raises anxiety levels, and makes you focus and worry about symptoms and the future.

This is all linked to the psycology of what I understand of the Stanford/Wise-Anderson Protocol.
When you accept and stop fighting it is then that you have the best chance of getting better.
The problem is though this is not how we have been brought up. We have been taught to keep fighting to the end, never give up, keep a positive attitude etc, etc.
They just don't seem to help in this situation.

Forget about the future, if you can live in the now, the real now, you will feel better.

[MastCells]

I know what you mean about being scared of the diagnoses. The worst thing for me about this condition is the anxiety/depression and general fear of dying that it has instilled in me.
I don't exactly conform to the general group of symptoms that most on this board seem to have. I have cloudy urine, sore kidneys at times and sore glands, all of which are not often mentioned here.

Dear Ginty,

I myself had back pain which I was convinced was emanating from my kidneys. I had all sorts of testing done. In the end, I realized that my anxiety about possible renal failure was causing my muscles in that area to tense up like crazy. Of course, I don't know about your medical condition, but I am just relating facts about my own.