Help with interstitial cystitis

Posted by stress53 @stress53, Jul 17 6:07am

Hi - I have tried many things with gynourologist and all have proved unsuccessful.
Just talked virtually yesterday and Dr and I agreed I’ll just be in touch as needed, since I don’t want to waste anyone’s time and spend money
Am thinking of trying a supplement L-Arginine.
Also I know I should get rid of coffee but having tough time- take amitriptyline at night to help me sleep with bladder issues, so often groggy in morning etc.
She had said something about maybe trying espresso/ latte with milk as bladder likes milk but
I guess that doesn't make sense as usually isn’t that stronger coffee?

Thanks much

Interested in more discussions like this? Go to the Kidney Conditions Support Group.

I have IC, too.
I think I have fewer problems drinking the shaken espresso drink at Starbucks. I substitute the milk with coconut milk. I can't drink a lot of it so get the smaller size and dilute it with more ice. I've tried low-acid coffee, but haven't found that any of them work for me so far.
Amitriptyline was prescribed at one time, but I couldn't stand the grogginess so quit taking it. In the "olden" days, the lowest dose of Lorazepam was prescribed. I like it because I can wake up and don't feel groggy. Since it was first prescribed, doctors no longer like to prescribe it. Not sure why--probably something with new laws/rules. I like it because it works for me, but am often encouraged to drop it by those who have no idea what people with interstitial cystitis go through just to get a decent night's sleep.
Hope you find things that work better for you. IC is no fun.

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Have you tried Prelief? It helps reduce the acid in foods and beverages. Also, the same company makes Peelief which I just started using as needed. Both really help. Diagnosed with IC in 1999. It’s a real roller coaster.

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I have had IC since 2002. I diagnosed myself (and then found) a Urology Dr. who dealt with it, he advised a drug "cocktail" was frequently better than a single drug. So, I have been on Bentyl, Elavil In the beginning, I took my meds with baking soda because it helps urine to be less acidic. After about 8 years, I was able to start drinking Coca-Cola Zero and other brown colored sodas. I still cannot have any clear or yellow sodas like Mountain Dew, Sprite, Starry, etc. I started drinking coffee as a child (7 or 8) and had to stop drinking it at 42 because it caused terrible bladder pain. I have never been able to start drinking it again. I also cannot eat any tomatos or tomato products like spaghetti sauce and pizza sauce. I loved Campbell's tomato juice...But! The major thing to know is that all things don't work for all people. It is imperative that sufferers...pinpoint their "trigger foods" so they can avoid them. There is a group called the Interstitial Cystitis Association that has lots of great information on coping methods, food diaries, new findings, etc. I believe they still have a searchable database of Medical Professionals by State. This autoimmune dysfunction generally affects women. 99% of the sufferers are women...

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@stress53 welcome to Mayo Clinic Connect. Have you tried looking into the Bladder Conditions Group? There are discussions there with information about bladder friendly diets, treatments and medications for various bladder conditions.

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