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Newly diagnosed, had a TURB two weeks ago.

4 years 8 months ago #48521 by sara.anne
Interstitial cystitis is a difficult thing to pin down. It is much more common in women than men and most patients never do get completely over it. Much more likely that you are still having issues from your TURB not quite healing yet. Hope this is the case, because I don't think you want to have IC

Be interested to hear what your doctor says..

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 8 months ago #48520 by Marble68
So I've found this:

http://www.ncbi.nlm.nih.gov/pubmed/20931548

Interstitial cystitis

I'm thinking this is me... It looks like it can be treated and cured. Have a Dr's appointment on Monday. I'm going to ask him about it.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 8 months ago #48509 by Jay
Marble68:

Get something for your depression. There are many different medications. I found Lorazapam 1mg works for me, twice a day, it just sort of keeps your head straight. When I forget to take it in the morning, the ugly thoughts start to pop in my head. I tried 2 others and they made things worse. I'm no expert at this, but I read about trying to cope on your own and had someone tell me, it doesn't work. I needed help and glad I did. It all still sucks, but makes it easier! Jay

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4 years 8 months ago #48508 by Marble68
Well, an update.

Still having pain in bladder and penis. Pain while urinating is sharp and pain while not is dull and constant.

On rare occasions, I'm passing clots.

The visible blood has stopped.

I've been taking Tramadol. It's helped soften the sharp pain and made the constant pain more bearable.

Urination frequency is still very high because holding any urine is very painful and the urge to urinate is overwhelming. I've tried external catheters, and those help me feel normal, at least.

I don't know why I'm going through this, but today I'm fighting depression. I was shopping online for leg bags and my spirits just crumbled.

My wife is becoming annoyed with my ups and downs.

I'm sick of being in pain. It's taking a toll on me. If the pain were in anything but my penis I almost feel like I could bear it. Yet, the constant sensations makes doing anything a struggle.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 8 months ago - 4 years 8 months ago #48406 by Jay
Marble, Also ask your doctor about Marshmallow Tea. You infuse it cold for several hours and it turns a gel like to coat your bladder, sort of like Pyridium without the color. Google it and read about it. But, ask your doctor first, we are all in the same boat looking for help. In had a naturopathy person tell me about this and it seemed to help me. But a I've also learned a lot of my symptoms seem to be in my mind AND as real as can be since I'm also on other medication! Good luck

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4 years 8 months ago #48395 by DougG
Marble,
Pyridium is available OTC -- but probably best to check with your doctor; Pyridium
Generic Name: phenazopyridine (fen AY zoe PIR i deen)
Brand Names: Azo-Gesic, Azo-Standard, Baridium, Phenazo, Prodium, Pyridiate, Pyridium, Re-Azo, Uricalm, Uristat

You definitely need some relief and some sleep.

Anita

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