Any bees have Interstitial cystitis/Painful Bladder Symptom?

posted 2 years ago in Wellness
Post # 2
444 posts
Helper bee
  • Wedding: August 2014

I just want to say that I also have IC, so I completely understand. Right now, I hold up really well most of the time, but sometimes it is upsetting. It’s really hard to be young and be diagnosed with a chronic disease!

I do really well on a combination of Elmiron and Amitryptyline. It really does take time to find the right combo of meds (I’ve had IC for maybe 3-4 years?). I eat really “clean” at home, but I am able to go out and have a drink or have a salad with dressing (darn vinegar!). It takes a while to figure out what works for you! For example, I can drink clear/light colored alcohol (like vodka or white wine).

I didn’t get UTIs until I got IC, but I can tell you that for me, the pain for a UTI just ‘feels’ different from IC pain. This might become the case for you. I got some wicked, recurrent UTIs until I started taking D-mannose. It has been a lifesaver for me! I haven’t had any since.  I would be careful with cranberry, multivitamin, and vitamin C pills–even though they are helping you with UTIs, they may aggravate the IC. The only vitamins I take are Calcium with D, because supplemental vitamins can aggravate IC (which is why some foods that seem okay, like Kix, for example, can be a no-no).

I think I’ve talked enough! Just no that you aren’t alone in this.

Post # 3
228 posts
Helper bee
  • Wedding: October 2015

I have IC as well, and while it sucks… it’s awesome to have an explanation for the pain!

I had many rounds of unneccesary antibiotics because of suspected UTIs, that didn’t actually exist. I’m talking 10 rounds of antibiotics in a 6 month period, and so my immune system is shot. I’ve been trying my hardest to get healthy, because I also have chronic vertigo & IBS (both of which my primary doctor suspects have been caused by the overload of antibiotics). I have found that what I eat really affects my IC, not just what I drink.

I no longer eat gluten, and very rarely consume dairy. I try to avoid any processed foods, and instead stick to whole foods. I’ve also cut out soda, and have limited my coffee intake to one a day (but I drink it with a 750 ml bottle of water to dilute it as much as possible. I also do this when drinking anything alcoholic). My urogynecologist and I spoke about following the IC diet, but it is VERY limiting. I basically try to modify the IC diet to my tastes/abilities. I know I should be more stern about it, but I have seen a huge difference since cutting all of the crap out of my diet. If my condition ever worsens, I will probably have to try a full-fledged IC diet, though.

For the days that it’s REALLY bad (generally the week before and after my period it’s at it’s worst), I take Pyridium (Penazopyridine). It’s aimed at treating the symptoms, where-as Elmiron is more of a long-term daily drug. SO and I want to try to get pregnant next year, so I didn’t want to start taking a long-term drug until I felt I absolutely had to.

Biggest thing though? Tons of water. I always have a 750 ml bottle of water with me, and am constantly chugging it back. I also agree with the PP, D-Mannose every morning to prevent UTIs, but cut back on the cranberry. I too found that it made my IC symptoms worse.

Over the past 6 months since I’ve been diagnosed I have lost 20 pounds, felt more alert, my IBS & vertigo have improved, and I’m sleeping like a baby. So, while the whole situation admittedly sucks, everything I’ve been doing has not only helped to ease my IC symptoms, it’s also made me feel fantastic in other aspects.

I hope you’re able to find some things that work for you, too!



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