Progression

[Godwillhelp]

Does anyone have thoughts about whether this disease is progressive? I have read many different articles where the doctors have very different opinons on whether the diesease can get worse. Some say it can and others say it will get bad quickly and then stay there. How does a person know if they have the progressive disease or not? I think if I knew the answer to this I could sleep better at night. It seems to me that I get new symptoms every now and my doctor says they are all related so does that mean I will be progressive? Do I have the next 10 years to just dread because of this horrible disease? Some people say that they control their symptoms with the right kind of medicines. I have been searching for those meds for over four years now.....I know that there are people that can stop a flare within days and I am always just waiting it out....and getting tired of waiting....
Any thoughts?
What do you think about Progressive IC?
Thanks,

Dana

[ICNDonna]

Beyond the initial period when IC is developing, only a very tiny percentage of IC patients progress. In my own case, my IC was diagnosed 31 years ago and, if anything, I am better than at diagnosis. At the time I was diagnosed, not much thought had been given to a diet connection, but I determined over time which foods and drinks increased my symptoms (interestingly, most are on the "bad" list). Once I found my food triggers and treatment options that work for me, I started feeling better.

Just remember that for every individual posting here that they are in pain, there are literally hundreds out there who are not posting because they feel good and don't need the support of these boards.

Hugs,
Donna

[patricia1]

I agree with Donna, most people do not tend to progress any worse than what their condition is at time of diagnoses. I do believe the longer it takes for your diagnoses and to start treatments the worse off your bladder will get, because you are not doing anything to help it. For me it took close to 5 yrs for that, and I was told once I had my diagnose should I have gotten it sooner maybe the meds and treatments would work better for me. For me my symptoms are pretty much a 24 hour 7 day a week thing. Then there are times when the normal symptoms I have are worse. For some it can take a while to figure out what will work for you. And it can be hard just trying to figure this out. But most people that post on here are in pain and looking for help, but also remember there are tons that dont come here as often because they are controlling their IC and dont feel the need to come here much.

[armslee]

Hi Dana,
This is a very interesting topic. You are right in that there is a lot of medical disagreement on the subject. Using my own case as an example, my physician is under the belief that I have a progressive disease.
Following my cysto and hydrodistention this week, he was able to confirm his previous progressive IC diagnosis based on the amount of scarring that he found in my bladder.
In fact, he found scarring throughout my abdomen that he is attributing to my IC including severe damage to my left kidney.

But as Donna stated above, this disease is different for everyone. Symptoms are different as well as treatments. I believe that is why the debate continues.

[creatingkarma]

My IC definitely progressed! I was diagnosed at 26 & IC wasn't too much of a problem then. I would flare about every 3 months & IC didn't interfere with my life except during those flares. I was told that I had a mild case back then. When I turned 30, IC hit me like a ton of bricks! I now have constant pain & the glomerations in my bladder have increased. When I was diagnosed, the ONLY treatment I was prescribed was a Bactrim a day & avoid spicy foods & caffeine. After a year & 1/2 of taking that I quit. It did not even keep the infections away! I didn't see another uro until my IC really started bothering me when I was 30. Now nothing seems to help.

[ICLori]

I'm also one of the small minority that has progressive (in my case, rapidly progressive) IC.

Blessings,
Lori

[VickiB]

My IC showed up in the mid 70's. I'd say I went straight to 'mid-stage'. I visited numerous doctors in the beginning but none could find a problem so I resigned myself to living with it. Over the next 25 years I'd try doctors off & on with the same result. Finally I was diagnosed in 2004.

In all that time I went untreated. I never recognized a relationship between diet and the pain so I continued to aggravate my bladder. Even so, my IC got no better, nor, no worse. Luckily for me, mine is not progressive.

Since diagnosis, beginning meds, and watching my diet, my days are now almost consistantly pain-free. (There is always a bit of irritation and I suppose I pee a bit more than is normal but I can live with that)

Hang in there, Dana. I bet you'll find a treatment that'll work for you!

Vicki

[Imustpee]

I started having bladder troubles when I was 6, in 1966....I was told I had IC in 1976...the dr gave me a DMSO treatment...yes, only one, and that did nothing....I went until 1993 until I saw another uro...we tried many DMSO treatments...it did nothing...then I saw another uro in 2004, and started on Elmiron, instills, aloe vera, hydroxizine....the works...and I did pretty good for a few months and then things got horribly bad.....I had my bladder removed 4 1/2 months ago...I have no pain, urgency, frequency...I "pee" a few times a day and once at night....I can eat/ drink whatever I want....going this path is certainly not for everyone...my bladder could only hold a little over 2 ounces in Dec.....I peed 40+ times a day....I had no life....so yes, after going so very long without hardly any treatments mine finally progressed to the point that I had to take drastic measures....take a look at my bladder pictures here on the ICN, they looked pretty bad...

[rosesitty]

Dana - that's what makes this disease so difficult to diagnose and treat, we're all different on how we react to treatment/meds and if or when it's progressive. I've had IC for three years. For 2 1/2 years, up until November of 2005, my symptomology was extremely mild. I could eat whatever I wanted but had to watch the beverages - minimal pop, carbonated beverages, tea, and absolutely NO alcohol whatsoever. In November I had a flare that I can now attribute to OTC sinus medications and going off birth control at the same time. In January, I developed a raging flare on top of a flare from drinking camomille tea infused with about 15 other herbs. I spent five months trying desperately to get back to my pre-November baseline. Even tho my symptoms have just recently decreased, I believe my IC has progressed somewhat. I think what I have now is my baseline, and pre-November is history. I'm taking more meds and having more instills, with less success than before. That doesn't mean it will happen to you. This is just my own journey, yours might be very different.
Hope this helps.
Stephanie

[elsie3205]

I definitely progressed too. I first started showing signs of IC at the age of 16 and it slowly got a little worse each year. Then at the age of 40 when I was fiagnosed with fibromylagia and VV, my IC symptoms increased dramatically.