Is ic progressive?

[mazzie]

Hi, I think I have IC although after my cystoscopy the Uro said my problem was other structures and the biopsy showed Denudation of the bladder on the left side. Anyway I have been struggling with my only symptom , which is irritation and pain in the bladder. I have it calmed at the moment with a no fun diet! I am worrying myself in case this disease is progressive is it Mazzie x

[ICNDonna]

Beyond the original stage when the IC is developing, only a very few people find it progresses. I was diagnosed in 1975 and mine has not progressed.

Donna

[jaime15]

I have had it for 10 years and it hasn't progressed. In fact, with diet and Elmiron, I have gotten back to living a very comfortable lifestyle. Of course I am always aware of close proximities to restrooms!
But I have actually gotten much better and have been off all meds for some time.
I hope everything works out for you.........and research this site..........it is a lifesaver full of the rights tools and real-life opinions that will get you through hard flares...........take care.........

[Rocklandgal]

I agree with Jaime and the others. Once I got straightened out with diet and such, it has vastly improved. I too always know where the closest bathroom is! I've been diagnosed for about six years and had IC for about ten or eleven years.
Karen

[VickiB]

Mine has not progressed. It came on 30-some years ago and has been like a roller coaster ride with some months/years being better than others, but over-all I'd say it's stayed pretty much the same. What has changed is my knowledge, treatments, and ability to avoid or deal with the symptoms now. In that way I am so much better these days than before.

When I first learned I had IC I was scared by what I read here & elsewhere. So I want to mention that over the years I've seen plenty of people come here in terrible pain, reach a point where they're better, and go on their way. They seldom stop in to post anymore because they're out living their lives. This kind of gives a skewed impression of life with IC. Keep in mind that the majority of people posting are newly diagnosed, or have been unsuccessful in finding anything that brings relief.

Anyway, I'd say it seems that most people do get better -and odds are you'll be one of them!

Vicki

[carried_cub]

Mazzie, when your dr says you have "denudation" of the bladder, what are they saying it has been "denuded" of, i.e. what's missing? If you are missing the protective lining and showing inflammation or internal damage, well no wonder you are in pain :-( But if you didn't talk about it with your dr--and I certainly wouldn't expect you to share everything on here--I'm curious why he/she is differentiating between different causes for the same probable effect, and why treatment for your angry ouchy bladder would be different than that from someone else with the same symptoms but no infection. I haven't seen much discussion of someone having kind of an acute injury that heals up, though I'm not an expert by any means and theoretically I suppose it's possible. Why would a good course of IC treatments not be beneficial for you as well?

I saw your first post mentioning denudation the other day and my first thought was, I think you need a second look fr another dr. But I don't know how the UK health system works.

Hang in there and I know it's hard not to be scared. I have my first flight next week after cysto/hydro and all I can wonder is if I'll be able to walk when I get off the plane
:-) In the meantime, I hope you find some relief and use the info on this site to get your self-help plan going!

[Judith56]

As others have said they have not had problems with progression. Did your doctor tell you it is progressive? In very rare cases it can progress but that is very rare. I happen to be one of the rare cases, but again the majority of people do not have it get worse.

[tigger_gal]

My mom, my aunt and I have IC, Mine has gotten worse and their bladders are the same.
I was not retaining anything then retainin 70cc's about 4 years ago, now I retain 120cc's
that is alot when your bladder it 250 cc's. That does not mean by any means your bladder will ever get any worse then it is. Like the girls said it is very rare.

[KarenAnne]

My doc said only 5% of IC patients progress.

[mazzie]

Hi everyone thank you so very much for replying I have been waiting and worrying and now I feel much calmer. I think my symptoms have improved on the initial 4 weeks ( nealy 5 months ago) I am using anti histamine and Zantac and that seems to help but it is so reassuring to know that this is not generally a progressive disease , and thank you for sharing your experiences and especially the "rare" one. I dont have urgency or frequency and usually can hold a good litre + so this is why I am scared, in case the frequency starts etc. My symptoms are irritation either mild or moderate, and flakes and debris in my urine most of the time. Thats all so I was thinking in the dark hours, " oh no this will turn into frequency and nocturia in a minute!"

The question about the biopsy: it stated denudation in an area on the left hand side of my bladder. I looked up the meaning and its the stripping of the bladder's surface. Its on the side of my colon. I was eating alot of chillis for pain and taking strong meds anti inflams, Lycria and Tramadol etc at the time and also drinking wine! I though oh dear I have really burned a whole in my bladder on the colon side. I am due for a 2nd opinion (or 4th) on 18th August and then will have to wait for a cystoscopy in our health system that should be about 5 weeks I think.

I started juicing veg about a month after my symptoms started, I grow them organically but the spinach and the broccoli etc seemed t aggravate so I stopped 2 days ago and the irritation is much better.

Can I just thank you all again you are so caring and it means the world to me right now as I fell very alone. Mazzie xxx

[tigger_gal]

have you looked up the ic diet? they list safe food and nono foods.