what to try first?

[redmama]

If I am watching my diet fairly carefully...I just cannot give up the coffee in the mornig so preface it with 2-3 Prelief tablets....what should I try next? I've read of success with MSM/Glucosamine, Aloe Vera, and cystoprotek (SP?). I see a urologist this week. He thought my problem was due to a tumor on my ovary but that has been removed and it didn't remove the IC symptoms. When I go back to him what should I tell him or ask him? He initially gave me Elmiron then told me not to take it when he decided the pain was due to the tumor. He also gave me some samples of Vesicare. I think the Vesicare actually helped, but he told me to stop taking it also. He did a cytoscopy before I had the tumor removed and found no ulcerations in my bladder, but I know what I am feeling and I am feeling pain. I don't have a lot of frequency issues...I mean I go regularly and afterwards always drink a big glass of water so I expect to go often. My main issue is burning...almost constantly. I hate to spend a bunch of money on something that is iffy. Have there been more successes than failures with the MSM? What about the cystoprotek? I know it isn't easy to fix, but some relief sure would be welcome. I also have high blood pressure and high cholesterol so my diet is limited by that also. Thanks.

[kadi]

The first & most effective treatment I've tried was Elavil. It reduced pain, frequency (from 60x a day down to 20, only taking 10mg), burning. I do have to be careful to manage my weight on this medicine, but it has been my #1 best treatment, so that's a side effect I just have to live with.

I would really work on giving up the coffee if I were you. Even with the Prelief, it could be irritating your bladder. And why end up taking expensive medications with side effects when you're continuing to do something that has no nutritional value & could be making you worse?

Hope you find something that works for you soon---

[VickiB]

Hi Red,

I could not give up my coffee either! Instead, I bought Kava which is an acid reduced coffee. Like 90% acid free. I won't kid you, -It's not as good as the real thing but better than none at all.

You mentioned your Uro did a cystoscopy. A regular in-office kind? If so, I wanted to say that I had one too and my bladder looked normal. My doctor said he was screening for tumors & such but that one couldn't see IC with that procedure.

Sorry, I've never tried cystoprotect or MSM, so can't help you on that. Someone will likely come around who has.

I also have the burning and hate it! My fix includes drinking a lot of untreated water like you're already doing. Baking soda with water helps but with your blood pressure that's probably not a good idea for you. There are OTC meds like AZO or Uristat, but I'm not sure if those are good choices either with your health situation. Has your Uro given you any suggestions on how to deal with the burn?

Wish I could be of more help. Hopefully your next visit to your Uro will be productive.

Vicki

[Dreamlove15]

Although I know it is very hard to think about having to give up a favorite food, but think about it. It says on this board somewhere, everytime you drink that coffee its like putting acid into your bladder. I would try really hard to stop the coffee. Maybe try a milkshake? or a IC friednly smoothie in the morning. good luck.

[traceann]

You could be following the diet to the letter - and not feel any better because that cup or two of coffee is undermining what you are trying to do for your bladder - that's not giving a chance to calm down so you can move forward etc. And look at it this way (this is what kept me sane, lol), it's a choice you are making for yourself if you give up the coffee, you are choosing to do it because it will help you help your bladder - and not being forced into it. That change in view helped me out immensely. I never doubted that I would be able to enjoy coffee again, I saw it as a temporary abstinence from it, lol. ;) Be it a couple months or so, I'd get through it. :smile tee

I switched to an herbal tea in the mornings so I was still getting my "morning warm beverage" or the decaf Postum "hot beverage", lol. Granted if I'd expected it to totally taste like coffee, I'd be sorely disappointed. But when I threw in all my fixings, lol, sugar and creamer, it wasn't too bad!!! ;)

And not to mention, at some point down the road you maybe able to sneak some back in and not have any troubles. I now tolerate coffee well, but I still use the lower-acid stuff - no sense tempting fate.

Hope you feel better soon and find something that works for you!

[leelee88]

I have to agree with Tracey, You could follow the diet and never get relief by still drinking reg coffee.. It was hard for me to give up, but it was just not worth the pain and burning it caused. But you could try buying some from the ICN shop or finding some low acid coffee.

And you know while it is true you could have IC you might also want to look into the possibility of having PFD ( Pelvic Floor Dysfuntion) this can also cause a burning sensation.