progressive??

[jena55]

I have read different things on this, but how many of you feel that IC is progressive? I have had about the same symptoms for 7 years, which is frequency and urgency, and now after reading everything and knowing what it is I have, I am scared it could eventually progress to pain and sexual problems as well. If you have seen progression, was it over along time period?
Any thoughts on this?

[SharonA]

IC is not considered a progressive disease. Yes, some do progress but it is not a large percentage. Please don't let other posts scare you.

[Claredale]

Mine was progressive, but like Sharon said, it's not common. My doctor said the same thing. But now mine is better than it's been in years. I would love to know what my bladder looks like, but I am too chicken to go through the hydro to see, so I will just enjoy feeling better and hoping that it will continue.

Tracey

[jena55]

I have never even had a hydro. My dr said he could do one if I wanted, just to see what it looks like, but that all my symptoms pointed to IC and there was no reason to have to go thru that. As of yet, I haven't decided to do so. It would be interesting to know just how my bladder looks... but I just dont know.

[bunnykinb]

I was dx 6/04 but began UTI symptoms 11/03. I had another hydro/cysto in 3/05 and my IC went from maybe IC in 2004, to moderate IC in 2005. I hope it doesn't get worse the how I already feel.

[jena55]

you know what the crazy thing is... i have never once in my life had a UTI... i have had plenty of yeast infections, but never a UTI... is that odd considering I have been dealing with supposed IC for 7 years?

[Claredale]

Back when I was first diagnosed with IC 20 years ago, that was pretty much the way they diagnosed it and made sure it wasn't anything else going on. I would have done anything my doctor said to do, that is just how I handled things since I had never been "sick" before especially with bladder or female problems. I don't really remember seeing the pictures of my first hydro, I was just thankful it wasn't cancer. I know he showed them to me, but I didn't know what I was looking at and afraid to ask many questions. After my 2nd hydro several years later, I saw all the damage and him saying that he had never seen bladder with so much damage I really got upset. He said that he didn't have the expertise to manage my severe IC, but he knew a doctor that could, I was scared yet relieved that someone else could possibly help me. She definitely was a Godsend to me and my family!

Again, it's not common for it to progress especially coming straight out of a remission like mine did.

[snowgirl]

I also was diagnosed with IC 21 years ago. I had frequency and urgency the most. My bladder capacity was back in the day 550cc under anesthesia now 175cc and fibrosed. I started having real bad pain 1.5 years ago that I never had before. Hey I did not take pain meds until 14 years into this diagnosis. In my young 30's I had a blast and drank a few cocktails and my bladder was fine.

I have aged now I am just 46 and the pain part has greatly increased for me. Over the years I went from two darvocet every night, then on to two vicodin just 2 years ago. Now I am at a pain clinic.

I think those people getting diagnosed with IC today if they get the right uro who knows IC and who has empathy ............ can be helped controlling the symptoms of IC. Now, 21 years ago when I was diagnosed they did not do interstim, no elavil, maybe atarax, hydrodistention with silver nitrate- ouch!!!

I wish I would have gone to a pain clinic years ago. I worked full time and then some OverTime with IC up until one year agon.

Everyone is different , everybody's bladder is different- so like the above post said don't get scared. They have made progress in IC in the 21 years I have had it- just not enough progress for me so I could still work.

Hope you do well. Good ideas - research and read the posts. You will learn a lot from some knowledgable ladies and men with IC.

Vicky N

[karen10]

I've done considerable research into just that as I was also worried. I went to the medical library at the hospital and went through as many medical journals as I could find there on IC. The newest research says what everyone is saying here, that the majority of IC doesn't progress. With early diagnosis and care of your bladder, the research says there is a good prognosis.

Personally, I just don't understand how it could progress if you are taking care of it consistently. By that I mean, eating a good diet, (IC safe) even with mild symptoms, and taking bladder friendly supplements. I don't plan on ever going back to a "regular" diet even if I do go into remission. I might "cheat" occasionally, but I think so much damage is done before our bladder even lets us know about it (that's the frustrating part), so I want to take very good care of my bladder for the rest of my life! This is only my theory of course, but I already know I'm very diet sensitive, so for me it makes sense to eat in a way that keeps my bladder and the rest of my body happy and healthy! :smile tee

[ICNDonna]

My IC was diagnosed in early 1975 so later this month I will be marking 33 years since my diagnosis. My IC has not progressed; if anything, I am better than I was then because I know how to handle it.

I have read that only a very tiny percentage of IC patients progress.

Donna