Interstitial Cystitis/Painful Bladder Syndrome

kblover

Cathlete
Hey all!

I was just wondering if any of you out there suffer from Interstitial Cystitis/Painful Bladder Syndrome?

My sister has it and is trying to find out ways to relieve the pain. She has already cut a lot of known foods (that cause flare ups) out of her diet, but still has pain and there doesn't seem to be any rhyme or reason to the pain.

The only medication out there, that we know of, causes your hair to fall out. As a woman, you know this is devastating!

So...anything anyone can recommend or share what has worked for them???

Cheryl
 

diane57

Cathlete
I did suffer from this for about 8 months several years ago and am recovered. (Or I guess recovering, because although I am symptom free, they say it can flare up again throughout your life.)

The medication that "can cause your hair to fall out" is Elmiron - I was on it for over a year and did not lose any hair - I think that side effect is quite rare - you might want to go to the Elmiron website to see what the actual percentage is. From what I remember, when I was researching, it's a rare side effect, and the hair loss is minor and certainly not total - maybe some hair thinning which is reversible if you stop the medication from what I remember. Elmiron helped me immensely - it takes several months for it to work, because as you probably know interstitial cystitis is caused by damage to the bladder wall (whether from prior infection, trauma, certain food and drinks, spices, sexual activity, etc.) - most people's bladders heal themselves just fine when they experience these minor traumas of life but for those with IC the bladder does not heal itself, it is inflamed and irritated and oversensitive. People can have urgency and frequency of urination, pelvic pressure (my main symptom) and various degrees of discomfort, stinging and pain. It can feel like you have a bladder infection all the time, but no infection is present. Anyhow, Elmiron acts like a coating for the bladder, but it is absorbed into the bladder very slowly over the course of several months, just because it is difficult for much of it to get through the digestive system and into the bladder. But it really was a godsend for me, and I had absolutely no side effects. After about 3 months I noticed my symptoms were much much better, within 6 months I was symptom free, after a year I discontinued the medication and have been fine ever since.

Your sister might want to visit the Interstitial Cystitis Network (really great, informative, supportive, message boards and lots of general info.) and the Interstitial Cystitis Assoociation (more research oriented but also very helpful). She should find a good urologist who has lots of experience treating IC patients, since many docs don't know much about this disease. I think both the ICN and the ICA have lists of experienced IC physicians around the country, or you could send them an email for a referral. Also, there are lots of different medications, instillations, physical therapy, and other approaches, so your sister will want to work with a urologist who is up on the current research and will be able to guide her through a treatment plan.

A few OTC supplements that really helped me:

Desert Harvest Aloe Vera - this is an aloe vera product specifically manufactured for IC patients, very successful for many patients, soothing to the inflamed tissues.

Cystoprotek - quercetin and some other ingredients - this product has undergone a lot of research and it is very effective. - it soothes the bladder while at the same time it has an ingredient similar to Elmiron that coats the bladder lining and helps to rebuild it.

Prelief - a tiny calcium supplement that can be taken with coffee, wine, spaghetti sauce, any of the "acidic" foods that would have a tendency to flare up symptoms - and it neutralizes the acid so the foods are gentler on the system.

The diet is very daunting - the theory is that while patients take their Elmiron or Cystoprotek or whatever they are using to rebuild the bladder lining, they should avoid anything acidic, spicy, cirtusy, potassium-loaded, caffeinated, alcoholic, etc. that would irritate the bladder, thus allowing it to heal better. The diet is freaking depressing. I stuck to the diet religiously for several months then gradually began adding back in foods one by one and since I have not had any symptoms for several years I now just eat as I please. I do not know whether the diet or the Elmiron or both was more responsible for my "cure" - I really disliked the very restrictive diet so if I ever have a flare-up again (knock wood) I may just try the Elmiron and see if that alone would help without the diet. However many people report that the diet is their most important weapon - I guess it depends on how severely someone is affected and how bad the offending foods make them feel and how rebellious they are about being told all the stuff they cannot eat. (That would be me :))

Also, FWIW, I will give your sister a few tips that helped me but that aren"t mentioned much on the websites:

Tall box climbs, glute work, squeezing the pelvic floor like in old Firm videos, always made me feel worse. There is supposed to be a big muscle/nerve tension component to pelvic pain (it is helped a lot by physical therapy, which I did not do - the nerves in that area are all interconnected and very sensitive) and I found those forms of exercise would worsen my symptoms, so I avoided them until I was much better.

As I was adding back in various foods, I was able to eat most things, but commercial cereals (the ones with the added doses of B vitamins) would always irritate my bladder, I had to stick to cereals from the health food store without the added vitamins. This was true even though I could take multiple vitamin pills with no problem. So it seems like everyone has their particular food that is bad for them - I kept a food diary and was able to figure out what the worst offenders were.

Ester-C is a non-acidic version of vitamin C - I would get a bad flare-up if I took the ascorbic acid version of vitamin C, either alone or in a mutliple, but Ester-C worked fine for me.

Advil is irritating to the bladder of IC patients - I still get a little queasy feeling in my bladder the day after I take an Advil. Tylenol works just fine with no side effects for me.

Finally, please tell your sister not to be too discouraged. When I was first diagnosed I scared myself reading how it's "incurable" and many people find that their pain worsens and nothing helps. However, I joined the ICN message boards at the same time as about 10 other women, and one by one by one we all found the treatments that worked best for us and all were cured or improved dramatically. I have not had any symptoms at all for several years, except for a very occasional unquiet feeling after I pee - when I get that I increase my water intake, make very sure I'm not doing any exercise that will stress the pelvic floor, cut down on offending foods, etc., and so far I have not had anything approaching my prior discomfort.

Sorry to write a whole thesis! I just wanted to share what I know because this is an unusual illness, not much is known about it, sometimes when I go to new doctors they have not heard of it, and new patients can feel scared and isolated. I hope your sister does well, and please ask her to consider the Elmiron - she can always stop taking it if she notices any hair thinning, which I think is pretty rare anyhow.
 

kblover

Cathlete
WOW!!!! This is GREAT information! I know she takes the prelief but I'm not sure if she knows or has tried the other things you mentioned! I'm going to pass this on right away!

I really appreciate you taking the time to write this out. As you said, it is an unusual illness and that 'incurability' is very depressing...not just for her but all of us. This illness, when flared up, causes all things to stop - going places, home improvements, and exercise.

Can't wait to check this all out with her.

Thank you again!!!
Cheryl
 

Our Newsletter

Get awesome content delivered straight to your inbox.

Top