Remission or misdiagnosis???

[Shalai]

Hi everyone,
I am so confused and I hope you can help me. It all started when I went to a gastroenterologist for a stomach problem...turns out she used to specialize in urology, and is extremely knowledgeable about IC. I explained how my symptoms started (in April of '02...a little burning, which, over a course of two months, gradually got worse til I could barely leave my house because of the pain involved, then started dwindling down), how I was dx'd (in Nov '03 with potassium sensitivity test) the meds I'm on (Elmiron x2, Elavil 25mgs, and Zyrtec 10mgs), and my pain level (zero at this time). I also told her I've rarely had to get up at night, and never had frequency or urgency (except with a UTI), .

Anyways, when she heard all this, she just got this :hmm: expression on her face, and wanted to know if I had ever been thru any treatments. I said "you mean DMSO?" and she said "no, heparin" ....to which I replied "the only heparin I have ever had instilled was when he did the potassium sensitivity." I also told her I only had a cystoscopy, but was not put under anesthesia, as it was done in-office. (this was at the first uro's I went to, who said I DID NOT have IC). She then told me she wants to get my records from my present uro, so that she can look over them. :hmm:

I know the most reliable test is the cysto/hydrodistention under anesthesia, but when my present uro put the potassium in my bladder, I DID have pain. It's just that something about the way this doc acted got me to wondering and rethinking things. She didn't doubt what I was saying, she just acted...well, puzzled... I guess would be the best way to describe it. I got the feeling she was questioning my diagnosis.

So, my question is this: Should I have a cysto/hydrodistention done, just to be sure?? I've read so many posts on here about having it done, and since I'm pain free now, I'm scared it will start the pain all over again.

Also, is it possible to have a VERY MILD case of IC??? Like I said earlier, after beginning with just a little burning, I had really severe pain for about 3 months total, and then it started tapering off. By the time I went to the uro who dx'd me, it had been a year and half after the pain first started, and by then, the pain had all but disappeared....I was still able to live a normal life. Also, I've never had the urgency/frequency that most seem to experience at one time or another with IC. Now, the pain is nonexistent most of the time...sometimes I get a little burning when I have too much caffeine, but that's about all. I can eat anything and it doesnt bother me. Could it be the Elmiron and the other drugs, doing what they are supposed to do? Is this what is known as remission? Or could I have been misdiagnosed??

Sorry this is so long...I'm just so confused right now, I don't know what to do. After the GI doc acted the way she did, now I'm wondering if I really have IC at all. But what else could it be?? What would you do? Any advice you can give me is appreciated.


Sherry

[Portia17]

Shalai

The only real way to get an accurate diagnosis for i.c is to get the cysto-hydro under anesthesia. They stretch the bladder big time and then they can see what color it is and if any pin point bleeding. I know you don't want to here that and I don't blame you.

I had bad pain before I had it done since it took them forever to figure out what was wrong with me. Just so you know the pain was not worse after.

In my opinion for your peace of mind I would have it done

Hugs

[Sarojini]

Yes, it is possible to have a very mild case of IC... many patients do. You do not necessarily have to have frequency and urgency to have IC just as you do not have to have pain -- sometimes in mild cases, burning and pain are the only symptoms. You may want to have a cysto/hydro to confirm things, as many doctors consider that the gold standard for diagnosis, but generally pain during the potassium test indicates IC.

I'd have your records sent to the new doctor and see exactly what she has to say about them.

[ICNDonna]

Some people with IC do experience total remission with Elmiron.

Donna

[vm]

If it were me, and this is just me, I would not have the cysto w/ hydro since you've already had the potassium sensitivity test. If a uro can question that when you had pain with it then a uro could question a cysto w/ hydro and say, "Lots of people without IC have pinpoint bleeding during it, also."

How long have you been on the meds? It could very possibly be that they have reduced your symptoms.

[Janie Miranda]

I agree with VM here. I wouldn't get the cysto with hydro if I were only in a mild amount of pain and seemed to be improving. From what I've read, there has been the occasional person that has increased symptoms that haven't gone back to baseline after the procedure. The medicines you are on very well may be what has made your condition improve so much! Hope you continue to feel great!
hugs,

[Shalai]

Thanks everyone for your replies....you have helped me a great deal. I think I will just stick with what I'm doing, and not have the cysto/hydro done (you know the saying...If it ain't broke....). I do plan on talking with this GI doc to see if she can recommend another uro who is closer to where I live (the one I have now is two hours away).

Thanks again...I feel better now!

:)
Sherry

[Noelle54]

Hello there I know exactly what you are going through!! I first started off with a pain in my ureatha that was only on the left side of the ureatha, didn't have pain anywhere else. So i went to my ob/gyn doc and he did a urine test, at that time my urine was infected so he treated it. Well I that pain was still there so I went back. He sent me to the uro. When I went to the uro I tol her that I go to the restroom 6 to 8 times a day. She said that was normal. And I wake up usually one time a night. At that time I never had pain or burning in my pelvic area. Then she took me in and did an scope of the bladder, I wasn't put under it was a in office one. My bladder help almost 600cc of water and when she looked with the scope she said it looked great and that she didn't think I had IC. So then she did the potaisum test and it burned so she said that I had IC did a DMSO treatment and gave me a diet to follow and said she would see me the next week. Well I was so confused and scared. I started reading about IC and it freaked me out. Well my husband decided to take me to a specialist that ws ina different city. We live in a pretty small down, where the doc. aren't known to be that good. Well any ways I reserached on line and found a doc that had written a couple of articles on IC, so I figured he would know about IC. I went to see him and he told me that he didn't think I had IC. He said that if I did have IC that it was not a classic case and that he thought I had an infection in my ureatha. Well a couple of days went by and I started getting a burning in my lower stomach. I had my period that week and I called to tell him about burning and he said to wait and see how I felt in a couple of days and I do feel better now. That doc said that the potsium test does test positive on people who have IC but it will also test positive sometimes on people who don't have IC. I also did some research on it and it said that it is usually 60 to 70% accurate. So I am with you. I don't know what to believe. I am not on any med and I feel good almost all of the time. A little burning now and then but not bad at allo. I am going to go see another doc. June 1st. I am hoping I get two doc's that agree. If yo find any answers let me know.

[Shalai]

Noelle,
When you had the burning in your lower stomach, did it feel like your bladder had scalding water in it? That's how mine feels...not a BAD burning, just enough to be annoying and know it's there, but it sorta feels like there is really hot water in it...it's hard to describe.

I know what you mean about getting freaked out...when all this first started in '02, and I was trying to find answers, I came across this website. The more I sat here and read, the more upset I got, and I was sitting here crying because I just KNEW that's what was wrong with me, and that there is no cure.

I have read before that the potassium test can cause a positive reaction in some people who don't have IC. I wonder if that's what happened to me, because at the time, the pain I had was not really bad, but still, I DID have pain, which went away when the nurse put in the heparin. Since then, my pain has been almost nil, but I've been taking the Elmiron, Elavil and Zyrtec since then too (that was in Nov '03).

I am having my records sent to this GI doc, just to see what she thinks about all this. Even though I really like the uro I have now, it's just so far for me to drive, and I hope she can recommend someone closer in my area.

Anyway, thanks for telling me your story. I was told by this GI doc that my IC was not "classic IC" either. I hope things go well for you on June 1st. Keep in touch and let me know what you find out.

Sherry

[Lisa_HaveHope]

Noelle and Shalai ~ I understand how you feel as well. Also, you other ladies out there that I know are experts on this ~ I can use your help as well.

I have some mild pelvic pain, specifically "burning" in the bladder and pain on my right lower side, frequency and occasionaly pressure.
Had a uro-dynamic test, cysto and hydro done on 5/6. Just got back from my uro (he's one of the best) and I'm clean ~ pics of my bladder look great, no hemmoraging/glomerations/ulcers and my bladder capacity under anesthesis was 650. He said it all looked great.
He tells me no IC but is sending me for pelvic PT to control my frequency, and sending me to his colleague who specializes in female urology and specifically IC. He agrees I have a voiding dysfunction but he's confident I don't have IC and believes/hopes/prays this will help me. I'm anxious to see this female specialist to get her take.

I've read this can happen but people still have IC but is that rare? If the cysto/hydro are the "gold standard" and I'm clean, does this mean I don't have IC? I'm being cautiously optomistic.

Thoughts?

[Portia17]

Well when my urologist did the cysto hydro he said he saw nothing and was waiting for biopsy results. When that came in it showed inflammation and some cells meaning the beginning of i.c. but not there yet - but oh the pain is.

[Lisa_HaveHope]

Sorry to hear you're in so much pain. My biopsy showed nothing. No increase in mast cells which is typical for IC. Everything was clear.