Interstitial Cystitis: Anyone have symptom relief tips?

@bella921
I'm so sorry you are having bladder problems. I am glad the Kegel exercises have helped you with the urine holding problem and the bladder spasms after urination. Every little bit seems to help, and that's a good thing! I hope the Kegels will continue helping you. Take care!

@dks Thank you, that is so kind of you. You take care, too. I hope for terrific outcomes for all of us.

@douglsrson You can get a coupon from the makers of Elmiron. I pay $75 for 90 days.

@blessedgramma Omg, I felt as though I was reading my own writing just now reading your account of suffering and frustration! I was supposed to go to P.T. for bladder pain (was told I have hypertonic pelvic floor disorder) I do not want someone to put their hand up my vagina and try and figure out what muscles need to be worked on and make a plan for me. At this point throughout so many trials and errors, tests after tests trying to figure out why I have so much pain-I am so burnt out and further Dr. visits seem like a waste of time, I feel like my husband wonders each day when I will start up with the symptom complaining. For the past year Ive had to self cath. once a day because my bladder isn't able to empty completely, so now- a person who normally got 2 or so UTI's a year, gets one every couple of months. Sometimes my urine test comes back as many bacteria and elevated white blood cells but when they culture it there is no infection. I've used hot packs between my legs, ice, ibruphrofen, etc. I have just found out I have moderate-severe narrowing in my sacral area-I have looked into the GAG layer and Im positive my bladder lining is so damaged that bacteria hides out in the cracks during a corse of antibiotics then pops back out after the antibiotic is done and starts to regrow. I can tell you this, you are certainly not alone in this, but it does feel like it-I HEAR you! I just want to feel normal again too! Im 66 years old and feel like Ive aged 10 years in the last two years. Hope we can help each other if not just to have someone that understands completely what this special kind of hell on earth is!

@krissyd
Cranberry juice is very acidic and can benefit someone with an actual UTI. However, for those of us who have Interstitial Cystitis cranberries are extremely painful.

@douglsrson

Yes it is, very expensive. I recently read that it may cause eye problems. Not sure how accurate that info is.

Bladder conditions (sigh!) There are lots of them. They can have similarities in symptoms and be difficult to diagnose / differentiate. I had an interstitial cystitis diagnosis 19ish years ago. The cause & my situation were special. I had pancreas transplant 20 years ago. At that time the pancreas was attached to the bladder. This was for the purpose of monitoring the urine for signs of organ rejection (good intentions, but…..). The pancreas produces enzymes for digestion (amylase & lipase). These are similar to what is found in drain cleaner and needless to say can be harsh! I was grateful for the transplant BUT this technique didn’t seem right to me. I was correct. My bladder was NOT happy and didn’t like it. It caused bladder spasms, huge blood clots in the urine and misery. I ended up back in the hospital several months after the transplant. This was diagnosed by cystoscopy. I had a couple catheters. One was to drain the flush & treat the bladder. One was to drain urine. During that time I had a prescription for suppositors that helped. They were called B & O suppositors. This stood for Belladonna & and Opiate. I think the idea was to calm the area without ingesting any drug or medication. In addition to that two other things helped. Copious fluid consumption. I figured I’d help the “flushing” along. I tried to limit caffeine, carbonation and citrus but I guzzled cranberry juice thinking the vitamin C in it would ward off infection due to the catheters. I don’t recall it being a problem. The other thing that helped was heat (heating pad, hot water bottle & hot soaky baths at home where I had more time and control of cleanliness conditions. All of this helped the interstitial cystitis situation until I had another hospitalization and a surgery called an enteric conversion surgery to correct the problem. My pancreas was disconnected from the bladder and hooked up to some part of the colon. Apparently the enzymes from the transplanted pancreas don’t disturb the colon.

This is something a friend with IC told me. She found that drinking coconut water was very helpful in keeping away pain.
Since it isn't a drug or something that could be harmful, it might be worth a try.
I am not in the IC group, but instead the bladder cancer group, but I saw your post and thought it might help to share that.

@marlymac12345 I think the information on the eye problems is pretty accurate. On one of my searches I found proof of a class action lawsuit and cases that were paid.