don't know if i have IC (I have urge incontinence)

[lulu22]

I have read a lot about IC. The only thing I don't have is PAIN.
I have urge incontinence, for my doctor it is detrusor instability. (I have severe urgency and frequency)
When I was a kid, until I was 17 yrs old, I pee in my bed, and suddenly it stoped. I was so happy, that I did not care about rushing to the restroom because I could have an accident.
But everything got worse...
I talked to my GYN about my urgency and my accidents, and he send me for some tests. I had blood in my urine, I was so terrifiend that I thout it was cancer!!!! (for the past 5 yrs, in my visits to the Dr., I had 4 times blood, an no infection)
Well, I went to an urologist, that tried to helped me with antispamodic pills for my bladder, but nothing helped...
I went to 3 different doctors, and finally I found one that helped me a lot.
I have an interstim that helped a lot to my frequency, but not my urgency, and he is injecting Botox. I'm doing great!!!!
He has told me that I have an inflammed bladder (in one time that I had blood, he did an office cystoscopy, and there were red patches all over my bladder, he says that it may be IC) He gave me Elmiron, nothing happened for 6 months, and then he installed DMSO - 4 instills - and nothing happened. I could hold it more the first time, than the other times, is this normal?...
MY QUESTIONS:
Do all IC patients have pain?
Can you have IC with urge incontinence?
Is DMSO supposed to be hold more in the last t6imes they instill it, or is it normal to have more urge in the last instill?

[lulu22]

any answers... sorry, but I'm worried

[tabasco32]

Hi lulu I believe all icer don't necessarily have pain with their ic but some do. It may gradually turn to pain like mine over months or years
lisa

[L. Thomas]

I didn't have pain either.

I didn't have pain with child brith, root canals, or spinals. I do have to have my hand numbed for an IV, so I do have pain.

My gyn sent me to a urogyn for other symptoms. (which at that time seemed totally unrelated to IC). I did have a significant number of other symptoms. The urogyn happened to specialize in IC and recognized the unusal combination of symptoms.

I think pain may be relative with IC. After beginniing treatment I know that the spasams I had occassionally in my lower abdomen have disappeared. My treatment is PRN lidocaine/heparin instillations. The instillations take care of all my problems (so far).
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[lulu22]

thank you, I just hope I don't get the pain!
Can you have IC and never progress (get worse) or does it always get worse? I'm 36, and scared to death to think how my bladder would be in 20 yrs

[Ginny]

It is so hard to say if you will process or not. I started out with frequency and do have pain. Most things I have read though say most do not progress.
I have bleeding also if you mean microscopic bleeding. Mine has been like that for many years.
Did they do a biopsy? That is the test to say if it is IC or not and also will tell you if there is any cancer there.
I think everyone is affected differently with DMSO. I do know the first few will not help as much as the 5th or 6th one will.
Good luck.
Ginny

[L. Thomas]

My urogyn says who knows for sure..just stay ahead of it.

This is alomst a 12 step disorder...on again, off again
But with this there is no wagon to can fall off of..just the one we try to get on!
Diagn. @55,still stable @57..keeping my fingers crossed.
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