Interstitial Cystitis

I know we have some members here with IC - and this is what my GP suspects may be at the root of my ongoing bladder pain and urinary tract problems.

I'm seeing a urologist in a couple more weeks for a more in depth work-up, but - how do you handle your symptoms? Can anyone suggest any anything I might try between now and when I see the doctor?

Thank you.

Laura

Vickie, thanks so much.

The exacerbating factors, yes. It's a real pain because diet cola helps with my nausea - but is havoc with my bladder pain/frequency.

I'm not sure what Uri-stat is (or if we have it here)...will have a look when we get shopping done over the weekend, but I don't do drug testing so at least don't have to worry on that front,

And I've got a call in to my SCS tech to see if I can use a TENS...my stim battery sits quite low & just to the left on my left abdo, not far from where I'd have to apply the TENS.

I'm just hoping the specialist comes through with a cancellation because it's driving me mad. The pain's not as bad as the rest of my regular pain but I think this is having for of an impact on my QOL.

I am currently seeing a physical therapist for painful bladder syndrome (AKA interstitial cystitis), and she has provided me with information regarding a lot of exercises I can do at home to ease my pain. My painful bladder is a result of tight pelvic muscles, so some of this may be specific to my situation, but I hope some of this may help you.

First, practice breathing from your diaphragm. Deep breathing has been shown to help ease pain; however, many people take deep breaths from their lungs--rather than from their diaphragm. The best way to practice this is to lay flat on your back. Place one hand on your chest and the other on your stomach. When you breath, you want to feel your stomach rise higher than your lungs. Also, when you breath from you diaphragm, you'll be able to almost feel the breath in your belly. You might be able to find a video on YouTube that demonstrates this.

I have also been told to massage my abdomen when the pain becomes intense. When we are in pain, it is a natural response for our muscles to tighten near the area of pain. It serves as a mechanism of protection. The downside is that this response can increase the pain we are in. My PT has informed me that by massaging my bladder using clockwise motions, I can relax the muscles in this area to decrease the pain and also increase blood flow. Applying heat to this area will also increase blood flow to relieve some of the pain.

I hope this helps or at least gives you a start on how to manage this condition. Good luck!

The best online source I found for help w/ Interstitial Cystitis came from this site from the National Institutes of Health: www.ncbi.nlm.nih.gov/pmc/articles/PMC1476005/
which was published, it appears, in 2002.

From the abstract, there was important help w/ food choices: "Diet modification, IC diet," followed by over-the-counter list of extremely helpful supplements. I chose to do the following and am pain-free and able to eat some of the forbidden foods in very small amounts without painful consequences:

--yes, I was very careful to follow their list of no-no food, and found that I should absolutely not eat any cheese, or anything w/ vinegar in it, or tomatoes, or citrus, or onion family foods. I had already taken myself off caffeine in Fall of 2013, so that wasn't a problem. I drink decaf. green tea and add about 1/16 tsp. of baking soda to the mug to de-acidify our very acidic well water (have Sjogren's so I drink a lot of water daily). Life without daily salads was a huge adjustment! When the dressing can't contain any vinegar or lemon juice, the combo of olive oil and dill was just not a good substitute!

--the article recommends an item (calcium glycerophosphate, brand name Prelief) which you can sometimes find at a non-chain pharmacy, by asking the pharmacist if they happen to have it. Otherwise, any pharmacy can order it for you (about $10 for 120 tablets) and can have it for you the next day. Now, the article, and other posts I've found, talk about taking 2 tablets of Prelief with or before your first bite of food. However, you will find posts everywhere about the build up of the stuff in your system that can cause nausea & diarrhea &/or yellow, loose stools. I stopped taking the stuff bec. of just those side effects, but found that once I got the stuff out of my system, over a few days, I did just fine if I only took 1 tablet with each meal. Still had the yellow stools but they weren't loose. If I start to feel uncomfortable in my stomach after a few days, I just hold off from taking the tablet for 1 meal. Have now purchased 300 tablets for $22.21 from Amazon.

--the other OTC item I chose to take is L-Arginine. This essential amino acid increases the production of chemicals that have antibacterial, smooth-muscle relaxant, hormone-releasing, and immune-modulating (by increasing T-cell counts) properties. And, wow does this stuff make a difference. The health food stores carry it: 500 mg three times a day and the Country Life brand I bought cost around $24 -28 for a bottle of 200. Do not skip taking this one!!!

--the last thing I did was to buy a bottle of whole Aloe Vera leaf tablets. The article recommends 2 tablets 3 times a day, but the tablets are huge and I hate trying to swallow them, so I only take 1 with each meal. This may or may not help the condition very much, but I will finish the bottle I bought.

I was one of the guinea pigs for Dr. Barry Marshall who discovered that Helicobactor Pylori is the bacterial culprit for stomach ulcers. I don't know how many people took place in this clinical trial, but my gut was wrecked by the quantity of different combinations of antibiotics I took over the course of 3 -4 months (this was back in 1987 or '88 I think). Anyway, eventually he found the right combo of antibiotics to kill off this strain of bacteria living in the stomach/gut. Of course, I ate yoghurt but the damage must have been huge. In 2002 I discovered my life-long lactose-intolerance and in 2005 my gastroenterologist discovered my gluten-intolerance. I think I have had flare-ups of IC for much of my adult life but thought it was from other food issues in my gut. I had never heard of IC. Anyway, after taking L-Arginine for even as little as a few days, watching my diet, and taking the Prelief, the pain virtually stopped. The other fix from the L-Arginine is one that will be strange to most people. Some time in my past I developed a deep crevice/crevasse in my tongue. Not attractive. Don't remember when it showed up, but it's been there for decades. After one month of taking the L-Arginine, it is almost completely healed. The tongue is a muscle, so I attribute the healing to that amino acid!

Hope this site will help everyone else the way it did me!
Good luck to all!