puzzling IC symptoms and diagnosis- Ideas anyone??

[erikaic]

Hello everyone.

Just wondering if anyone else out there is in a similar predicament. I had a cysto and was diagnosed with 'severe' ic based on that in 2001. Since that time, I have done pretty much everything barring a bladder removal to relieve my main symptom which is frequency. Basically, I stand up after peeing and my bladder still feels full. Two months ago, after having a few months of success using Uracyst instills, I got another cystoscopy and I no longer have what looks like an ic bladder. I thought ' I'm cured!'. Well, we're back to frequency issues again. I am not sure what else to do at this point. I have gone back on my meds again such as vesicare, elavil and atarax and rescue and uracyst instillations. Also taking Quercitin, Aloe and Prelief. I really don't know where to turn. Does anyone else have a similar story to mine? What did you do or try? Is there something I'm missing here?

Thanks everyone

[nanawaggs]

HI, erikaic ~

In hearing that you thought you were "cured" did you fall into bad eating habits that might have brought on your symptoms again? I know I'm constantly fighting my denial and when I begin to feel better think, "This just can't be a forever thing" and will treat myself to a couple strawberries, grapes, etc....than bam....back to instills and my meds to try to get things under control. I'm there right now, up at least 8+ times during the night in pain trying to "go" and you think I'd learn!!!

It really seems like you've been doing so much to keep your symptoms under control.....I've no experience with Uracyst instills but maybe you need to continue with them?

Prayers that you'll soon be feeling better. Since you felt better, you'll probably find the key to that success once again. Hang in there and keep us posted.

[Becky Jane]

Hi, just a couple questions for you. Did the uro do a hyrdrodistention with the cystoscopy? If not, he wouldnt be able to get a proper look at your bladder wall. The glomerulations dont show up on a regular cystoscopy. So frequency is your major issue, is that right? Have you tried a bladder retraining program? This is where you hold your urine in for progressively longer amounts of time each week. If youre going every 15 minutes you would wait 5 more minutes the next week and then up the amount of time 5 minutes. This can take a few months to see results but it can work. It helps the nerves in the bladder to stop misfiring and telling you that you need to void. Its best to do this if youre not in a lot of pain and is better done with a partner or health practioner so they can support you.

[Briza]

Hello Erika
That's amazing that the results from each cysto were so different!
I see in your signature that you were diagnosed with the cysto/hydro, so I'm guessing this more recent cysto included a hydro as well??

I'm wondering:
Did the same doctor perform both surgeries?
Do you know how much you were distended each time? This information is included in the post-op report and should be listed in either mL or cc.

I imagine you have tried Elmiron or Cystoprotek by now. How about an antispasmodic such hyoscyamine or one of the pee blue meds like Prosed DS? And definitely the diet.

Keep us posted. I hope you find some relief soon.

[ICNDonna]

Unfortunately, it can feel like you're "cured" when it's the medications and diet that are controlling the symptoms --- when the medications and diet go away, the symptoms return. This has happened to some ICers who were symptom free for several years.

Just remember that you went into remission once --- you can do it again!

Warm hugs,
Donna

[KarenAnne]

I have discussed increasing my meds when I am flaring with my urologist. I also take elavil (generic). I currently take 20mg. & he said I can go to 30 mg. when flaring. Maybe you can ask your doctor if he can adjust your hydoxyzine & elavil for you. Maybe you need to change some things in your diet also. I know how frustrating it is. I hope you are feeling much better soon!