Do I have IC or not?

[jenrobhen]

:confused:Has this happened to anyone else?...

I was diagnosed by my OB-GYN in July with IC through the PST after having several negative cultures when I had UTI symptoms. I went on the diet (elimination of all trigger foods, bought only all natural foods, did not eat out, etc) and my pain didn't go away. I also did 6 months of Elmiron and a few months of Elavil. I received a rescue solution at my OB-GYN's and when I didn't improve, she booted me to a urologist.

My urologist doesn't think I have IC because I don't have frequency and hardly any urgency. I mostly have constant bladder discomfort/pain and it burns when I void. After I void, my bladder pain and urinary tract pain increase, which she thinks is contrary to IC. :headbang:

I had an IVP and everything looks normal. She's put me on a low dose on sulfa and I decided to have a hydrodistension w/ cytoscopy next month because I want to know what is going on. I'm so afraid my uro will come back and say that nothing is wrong. I just want this pain to go away. It has affected so many facets of my life. :help:

[ICNDonna]

If you had a positive response to the potassium test, it's pretty likely that you have IC.

Donna

[karen10]

I have mostly pain, never frequency, urgency only when I eat something wrong! I also have increased pain for a while right after I void, until my bladder starts filling up again. The literature does state this can be true for some people.

There are many different things to try for IC, so don't give up after just trying Elmiron and only one rescue instillation--that's often not enough to notice a difference in many people. From the research you will find that a cysto/hydro may not find more than a PST, unless they find glomerations/ulcers. IC often takes a long time to get under control, so just hang in there! I agree with Donna, a + PST is a very good indicator of IC. Personally, you couldn't persuade me to get a hydro/cysto after having a + PST! But I'm a whimp! :rolleyes:

[ICNDonna]

There is sometimes a substantial relief in symptoms following a hydro. In fact, it's been a major treatment for me since my diagnosis almost 33 years ago. After a hydro I feel better for months.

Donna

[Tracie]

hydr/cysto is a great way for them to see your bladder and at least they put you under for that. I had one in October and it showed a normal bladder, so I took my problems to a gyno.

[GriffsMommy]

I had the same problems you did. I had a PST and was diagnoised with IC at my gyn's office. They wouldn't give me some of the very common treatments like Elavil so I actually went to a uro on my own. He said he wasn't convinced I had IC because the PST is not the best test out there to diagnois IC. He had me do the in office cysto and then when I didn't get any better after he put me on antibiotics for awhile, that's when he did the hydro/cysto. It did show I had IC after going through all of those other tests. Once I went to see a pelvic pain specialist he said he would have never wasted my time and money on the hydro/cysto. He said with the positive PST and my symptoms he knew that I had it without seeing my bladder. It's up to you as to what tests you want to do but the PST is regarded as a pretty reliable test these days for IC. I hope you find a treatment that works for you soon. :grouphug:

[kuntrygurl78]

:confused:Has this happened to anyone else?...
My urologist doesn't think I have IC because I don't have frequency and hardly any urgency. I mostly have constant bladder discomfort/pain and it burns when I void. After I void, my bladder pain and urinary tract pain increase, which she thinks is contrary to IC. :headbang::help:

I often times dont have frequency or urgency. Im like you in that I just have discomfort and pain, and the burning. Sounds like IC to me. Regardless, you are in pain, and you and your doctor should work together to try to fix that. Wishing you good luck!:pray:

[hdb1982]

Here is what I found about the accuracy of an IC diagnosis based on the pst test alone:


The test consists of instilling a solution of potassium chloride, known chemically as KCl, into the bladder via urinary catheter. It has been suggested for two uses: 1) a diagnostic test for IC; 2) a predictive test for response to IC-specific medications such as Elmiron and other heparinoids that are thought to work by coating the bladder lining.
The KCl Test was originally designed as a possible diagnostic test for IC.[1] Yet, based on current available data, this test lacks accuracy. One study found the KCl Test to be 75 percent accurate, i.e. if 100 IC patients are given this test, only 75 of these patients will be diagnosed accurately. Another study found the test to be only 60 percent accurate in the diagnosis of IC.[2] More recently published data suggest that the KCl Test should not be considered as a reliable tool for the diagnosis of IC.[3] These researchers propose that clinical findings (urinary urgency, frequency, and/or pain in the absence of other urological conditions), along with cystoscopy/ hydrodistention, are still the most consistently accurate and reliable means of diagnosing IC.[4]

Another thing you may want to ask your dr to perform is the urodynamics test. I have some info on the reason for that test below:

Urodynamics:
At times the picture is not crystal clear, and more information is useful to make an accurate diagnosis. If surgery appears to be the best solution, at times more information is needed to help plan the surgery. "Urodynamics" refers to an outpatient study that involves positioning in a special chair and placement of very small catheters which have pressure sensors into the bladder, and either the vagina or rectum. The goal is to observe the behavior of the bladder and urethra as the bladder is filled slowly with sterile water. If the bladder is overactive, the pressure will rise, and this pressure change can be measured. With the bladder filled to a specified volume, coughing and straining are performed to allow measurement of the pressures on the bladder that will cause an individual to leak urine. Additionally, a device will pull the catheter slowly through the urethra to measure the pressure generated by the muscles in the urethra. These studies help determine if the cause of ifreguency, urgency or incontinence is anatomic, a sphincter deficiency, or an overactive bladder. Finally, once the bladder is full, the patient is asked to empty her bladder while the volume and rate of flow are measured. This helps determine if the bladder and urethra function normally, whether there is an obstruction, or if straining is required to pass urine.


I was dignosed via cystoscopy/urodynamics in same day surgery at the hospital. The urodynamics testing was very helpful for me and my dr to be able to tell what was going on before, during and after I urinated. I was straining very bad and didn't even know it. I was also having spasms during and after urination which accounted for why it was painful when I peed. I was also having severe spasms when my bladder was completely empty. It was spasming for no reason which we believe causes a good part of the pain I deal with. I hope this information is helpful and eases your decision about your diagnostic prodecures. Don't think I am trying to persuade you in your decision. Each person shoud choose whatever they think will benefit them most. It is just my experience that they cysto/urodynamics was painless and gave us a picture at what was was going on inside my bladder. Since learning that I was straining while urinating, which if it weren't for the urodynamics I never would have known, we have been able to address this issue and I am learning not to do it.
Good luck with the hydrodistension and cystoscopy next month and all future treatment. I hope you get answers and relief. ~ Heather

[Dreamlove15]

I have mostly bladder pain and horrible spams especially after I void. It burns OH SO BAD. UGH. The only time I notice the frequecy is when I have an infection or severe flare. I have alot of pressure and pelvic pain on its own, but I do have IC(just diagnosed). Im sorry you got booted to another doc. I know how hard it is to have to explain over and over your symptoms to a new dr. I thought having IC was going to be a pain, but doctors are beginning to be my other PAIN! Trust me its not easy this road were all on, but try to stay as postive as possible. I haven't been the most postive lately just because of my doctors not discussing my condition, just handing me scripts and sending me on my way, but just be the "captain of your ship", do research. come prepared and dont let a doctor tell you your pain is all in your head. read as much as you can, record as much as you can and most of all take of yourself. I am learning just this past week how important it is to not get down, i know there is light at the end the tunnel soon enough. IC isnt going to make life easy, but it sure is not going to take away my smile. Because IC is most definitely a serious condition. It needs to not be brushed off because we are difficult to treat. Everyone has different symptoms, I guarantee if we all came into the room together, not everyone experineces the same, but we all have IC. I will never let a doctor tell me any different. We should not be treated with frustration and anger just because a Doctor has no cure, in fact IC should be given more attention because it is w/o a cure. I wish that we could all find a doctor that has the compassion and knowledge we all so desperately need. I wish you the best of luck in your struggle and that you find relief soon enough. :angel:

[jenrobhen]

Thanks for all the wonderful support. :)

I'm getting the hydro and cysto done on Monday, January 7th. I hope to get some answers from it.

[saranwrap]

I can't believe you all have to go through all this (I exclude myself for the moment as I have yet to go through all the tests and treatments)

When I first heard about IC from my GP I thought, "Great! We know what it is! Give me the cure!"
But of course after researching everything and reading all the posts on this site...I know it's not that easy.

I hope that you feel better soon - I'm still so unaware of how this all works so I can't offer any more than that.

"We should not be treated with frustration and anger just because a Doctor has no cure, in fact IC should be given more attention because it is w/o a cure. I wish that we could all find a doctor that has the compassion and knowledge we all so desperately need."

eeep...can't wait to get the ball rolling on this stuff.

Good luck!
xxxx

[mom_in_ma]

These are the same symptoms I've had (with the exception of a two year remission) for five years. IC is a spectrum disorder...in other words...many different symptoms are lumped together under the umbrella of IC or Painful Bladder Disorder.

The most recent urogyn that I saw (and the first one to know as much if not actually MORE about this stuff than me - usually, I know more than the doc! I'm not bragging, I've just been reading about it for five years!) said too, it's a spectrum. He's not convinced I have IC in the traditional sense...shrinking bladder, pain when filling vs. emptying, etc. (My capacity is normal and has remained so the entire time) But, I DO have nerve pain, my bladder really does misbehave, etc. That falls under the umbrella of painful bladder syndrome. So, yes, I think you're under the umbrella. I also think there are many causes, that's why some meds work for some and not for others. It's a complex disorder and research is only breaking the surface of it. Thankfully, NIH, etc. is finally putting some money toward it.

The newest theory is that it's more like Complex Regional Pain Syndrome...in other words, more nerve related vs. a bladder lining issue. A nerve gets irritated, hyperactive, and presents with pain that then activates all the nerves around it. It could start in the bladder....but it could start anywhere in the pelvic region and present itself in the bladder. Is it the correct theory? I wish we knew!