My story

[starflight]

Let's just say because of the internet I knew immediately this condition was IC. Thank god for the web or I'd have been forever ignorant and sifting through worthless physicians that haven't a clue how to treat it or why it occurs (like we all do even now). I must say I'm made ill by the lack of real progress in treating the cause, and what's making me feel even sicker is the appearant lack of real understanding these supposed experts have. How hard is it to take a few patients with IC, give them extensive medical testing and I mean down to the bone, analyze everything way beyond the norm, it should tell you so much more than treating control groups with studies that have unclear evidence like L-Arginine, jeez! These lazy Urologists make me GAG haha (pun intended). Now for my story.

Around 1999 I developed a UTI, being a guy I had never heard of anything like that before. I hardly knew they existed let alone what the symptoms were. So in effect I suffered with it for god knows how long, months maybe, but then I finally figured it out and had my parents take me to get the testing. It came back positive of course and I was given a prescription for what seemed like a simple condition to treat. I took all of them, but the symptoms still maintained their hold on me. I was confused and baffled so awhile later I went back and had the same test done, NEGATIVE! What lies I tell you, I'm almost positive bacteria cause this illness, but these Urologists are about as bright as toaster ovens. Anyways so I'm cured medically by my symptoms persist, which basically sucks.

As time passes (a few months) my symptoms vanish, almost to the point of being cured but not quite. Then I figure out on my own foods trigger this illness, I had a few hot pockets and went to sleep, I woke up to urinate and that's when the agonizing pain hit me, it was horrible. I learned very quickly anything with alot of preservatives in it would trigger the pain, not frequency but pain! The only things that would create an urgent need to urinate for me were tea and a few other drinks, however MILK seemed to help calm my bladder despite what you all have heard. I suggest it's due to the mucous produced from milk, etc. But anyways let's continune.

So for some years I managed my condition by merely avoiding certain trigger foods which seemed to work well, however my penis was very sensitive after this and so I really wasn't sure what to make of it. I've since heard the lining of the penis is very thin and easily suseptible to bacteria if they are present.

Now as time passed my condition did basically cease, although trigger foods would still cause an issue at times (I never liked the trigger foods anyways so it didn't matter to me).

My experience with doctors, well...... I was curious to see how a Urologist, a real one, would react to my IC. So I took it upon myself to go see one and find out. This idiot did a simple urine test, said it was negative, told me he thought it sounded like I had IC (which I already knew daft fool) and then suggested I avoid acidic foods. Since I'd been doing that anyway he had been of no help and I laughed at this worthless human as I left the building. I thought "I knew it, they have no damn idea how to treat it and most urologists won't want to help because it's incurable and difficult to treat). So far all the things I've been reading on this site tell me I'm right, they think it's a joke still and don't take it seriously, otherwise they'd find the cause instead of treating symptoms.

Anyways I feel nothing but pity for myself and others here, I am certain this is either 1. Bacertial in nature 2. Immuniological 3. I know physical damage can cause it too - but needless to say I opt for #1 as more reasonable and I see no logical way anyway wouldn't. Sorry I don't believe I'm all knowing just kinda peeved right now about it all.

So my condition came back with a vengence about a month or so ago, but it's not urinary frequency that's my problem (although it has been triggered my teas etc) it's the urinary pain, it's almost unreal, it's not 100% pain yet but I'm afraid of just how bad it can get?! Why should it burn anyway unless something in the urine itself was irritating the lining of my urethra! It makes no sense! But there it is, and does.

I'm currently trying Aloe Vera Caps along with MSM, perhaps it will help. Also I'm using Trader Joes Very Green. From my research I really do think this is a bacteria of some sort, although my symptoms seemed to get bad when I began taking Ester-C (yes bioflavinoids ) but it wasn't immediate which leads me to suspect an immuniological response of some sort. Either way I know 1. hypnotic relaxation helps the pain to subside and 2. Vaseline Total Care will always stop the urinary pain after it's occured, sometimes it works before but not always.

This is my story so far, I assume the blood the urologist found years ago was due to bleeding in my bladder from irritation, he seemed totally unconcerned like it was beyond his ability to help haha, jeez.

I'd like to note I have allergies and even got injections as a kid (contributing factor to IC?) so it's rather interesting to me, I will try anything I will never give up, of course unless the pain drives me insane later ha!

[statesboro]

I wanna start by letting you be aware that I am a dude as well. I did notice you seem to think IC must be bacterial in nature. That could actually be. I did have clean urine at the urologist office the other day.(even though I have had 2 UTIs on top of IC in 2009) Also, I went through more than a single round of antibiotics before being properly diagnosed. (and got told inflamed prostrate) Yeah, right! I was only 31 in 1997.(12 years diagnosed next month) Besides, I did not notice any help with antibiotics. Oh, well! I did get the impression that you never got properly diagnosed and that you never went back to the urologist that you called worthless. Why did you wanna say that? Besides, he did mention IC. Come on. You sounded ticked off while typing the thread. Yep! I don't know, but we all waana know how we got it and how to get rid of it. Of course, we don't enjoy having IC, or any chronic illness. Anyway, it is not the only medical condition where a doctor may say we don't know the cause or cure now. I deal with IBS and CFS as well.(no known cause and cure, either) What a bummer! Hey! Life goes on. Mine isn't always very exciting, but I still get by. I don't feel pity for me. By the way, I don't think you must like any doctors too good. I do know some people have had some bad experiences with some. Yep! Regardless, some others should chime in. I will let that be all now.

[starflight]

Thanks for your reply, I'm more or less just tired of doctors and anyone that says "we don't know" in regards to an illness. I mean with all their tech now they can surely take 5 people with IC, completely work up their health profiles (I mean every test imaginable) and find some abnormalities besides saying mast cells (any 1/2 brained doctor would guess) so in effect I just feel they are all dragging their feet and wasting valuable time on things. I have a feeling there will never be a cure for this even though there probably is one.

I'm sooo tempted to become a Urologist and figure this out myself once and for all, I mean jeez why not become a doctor if I'm going to suffer with this the rest of my life? I would certainly do more research than these quacks have haha.

ok yea maybe I'll write more later I'm tired

[Marisol]

Hey Starflight,

You sound worst than me when I first joined this forum. I was so mad and out of control I just wanted to scream. After reading the IC diet and the foods to avoid, my life changed instantly, even though I had to give up some of my everyday foods that I enjoyed. I now know that foods trigger my spasms but not water, I drink tap water or bottled water if I am not home. About the doctor issue that you have i completely understand it. What people have to understand is that they are working and making money just like anyone else. Most of them lose the ability to listen to their patient, they just want you in and out. I have learned to be aggressive and demanding because I am the one suffering not him. I hope that you will find a doctor who will first listen to you then treat your IC. I know my IC was caused from my previous surgeries the last one being the worst. I am glad that you are on this forum because you will find understanding and compassion from others who are living with this disease. So when you about your condition we understand and can offer you some

[VickiB]

Yep, I can relate, having tried some doctors who ought not be in medicine. I imagine it's like any other career. You'll find some people who love their work, are good at it and go the extra mile, -but that's not the norm. Some will be average/competent. Some just do enough to keep from being fired, and then some ought to be completely out of a job. The trick is to find one in the first group, or at the very least, the second! They're out there but it takes a lot of trial & error to find them.

Probably the best thing we can do is to educate ourselves about IC as much as possible. It sounds like you're doing that. And like Marisol mentioned, leaning more towards the aggressive and demanding seems to be necessary in order to be taken seriously. I tend to be passive and that usually just gets me 'blown off' so to speak. It's one thing to be blown off by a sales clerk, but with what it costs to see a doctor (and especially if you're in pain) I kind of expect a certain minimum amount of help!

Anyway, my IC started much the same way, with infection. For a long time I thought I had bacteria that defies all of their testing because they would check my urine and keep telling me I was fine. I knew I was not.

I'm taking it you have yet to try any of the more typical IC meds/treatments? If your last uro offered you nothing more other than the suggestion you simply avoid acidic foods it sounds like you picked a really bad one! (I think I saw the same guy ) It might do to try to give it another shot to see if you can find one of the good uros!

Vicki