Is doing a cystoscopy the only way to get a diagnois?

[GriffsMommy]

I have been reading a lot and it seems that a lot of people have a cystoscopy done to diagnois their IC. I haven't had it done. I only had the Potassium sensivity test done a little of a month ago. When I was at my gyn for my endo she did a pelvic and pushed on my bladder and it really hurt. That's when she told me that I might have IC and should do the test. I went back and of course it really really hurt when the put the Potassium solution in so they told me that I have IC and gave me a script for Elmiron and sent me home. They didn't mention doing a cystoscopy or anything, should I be concerned about that or is the potassium test considered enough to diagnois the IC? They also made it sound like the Elmiron can help put me into remission and I should only need to be on it for about a year. Has anybody else had a situation like that?
Thanks for any info :toilet:

[barbour1]

Do you have a urologist?My first urologist did not treat ic he said i needed a uro that deals with ic.I am not a Dr. they probably have a good idea that's what you have but as far as i no they have to do that hydro thing in same day surgery ,when they fill the bladder that tells them how much urine you can hold and also thast is when they can see the pin point bleeding.Have you ever seen a picture of a bladder with ic? A regular bladder looks white and clear one with ic (like mine looks like an eye that has all sorts of red lines and bumps it looked like a moon with craters and that's the inflamation.I got lucky my second uro was Japenese and great.I don't no what other people go through but this was my treatment.first the hydro what ever they call it in same day surgery he sent me home with a catheter for a week.He put me on elmiron real expensive back then because they were the only ones that had a patten on that med.and al-argine.from a health food store , hydroxine,and dmso treatments in his office once a week and detroll and some doctors will say sprinkle prelief on your food i think it takes the acid out.I hope this info helpes you..Merry Xmas:hi:

[GriffsMommy]

Thanks for the info, I don't have a uro, my gyn was actually the one who did the sensitivity test and diagnosed me. They didn't even mention me seeing a uro. I went to one back before I had my son when they found endo in my bladder and i had to have surgery to have it removed. I was supposed to go back to him after I had my son but then I got laid off, lost my health insurance and ended up never going back. Not only that but I knew that he would want to look at my bladder again w/ the scope in the office which hurt like crazy when the endo was there. I have another appt w/ my gyn at the beginning of the year for my annual exam and to see how my pelvic pain is after being on the Elmiron for a couple of months to see if I'm going to start Lupron or not. Maybe I'll mention to them then about going to a uro.

[Rebeccanne]

I don't know how reliable it is, but my urologist only did the potassium test. She never mentioned doing a cystoscopy. But now, after a year and a half with no improvments, only worsening symptoms... my urologist wants to do a cysto just to check out the bladder and see exactly what is going on. So I think being diagnosed with the potassium is the easiest way to tell, and not all doctors want to do the cysto... But I personally would have rather gotten the cysto right in the beggining... that way we could have seen what shape my bladder was in, and what it looked like, and how bad the ic was. I personally think that is the best way to do it... the potassium test tells you that you probably do have IC, but you can't tell how bad you've got it that way.

[vm]

You do not have to have a cysto w/ hydro to diagnose IC. In fact, many doctors aren't doing them anymore. The results aren't always "accurate" and some think it is a harsh procedure. That said, I had one for diagnosis and some people here have them every so often as a treatment for their IC.

Please don't worry that the potassium sensitivity test wasn't enough. :kissing: Many Icers are diagnosed that way as well.

[Katrina]

No a hydro is not the only way to tell if you have IC. Cystoscopy..there are two kinds...one in office you probably had a slight one before your potassium test....all that is a catheder and small glance inside ...it can see only severe dammage...potassium sensitivity is a widely accepted diagnostic tool for IC too. Its lack of popularity mainly falls in it often being painful for the patient making in unfun for the doctor to give.

Kim is right that hydro's are loosing popularity!! It is keeping its popularity as a treatment for IC but as a diagnostic tool it has some negatives: it can cause some inflammation making faulse possitives possible if the doctor is not experienced. It is surgery ....meaning recovery time.

I do agree that one of the good things of a hydro is telling the severity of the IC.

the potassium test tells you that you probably do have IC, but you can't tell how bad you've got it that way Right that part comes only by your reaction and symptoms that way. I screamed and the nurse told the doc it was the worse reaction she had seen in a long time....I had some experience with pain at doctors from test....the good part was that the med she put in did help...so I tend to think a rescue instillation would be a nicer way of doing something very similar...but tests for relief instead of pain.
http://icandme.9.forumer.com/index.php?showtopic=12 diagnosis struggles

I don't think you need another diagnostic test unless you don't get results with treatment.

It is a hard choice with doctors on how they diagnose IC. PUF questionaire is considered the best by doctor but it one of many tools....there is not one diagnostic tool that is the rule with IC! :grouphug:

[L. Thomas]

According to my urogynecologist the problem in the medical realm is there are no specific indicators to diagnosis IC. He feels that you can diagnose IC with screening inventories based on symptoms as accurately as you can with expensive and painful test.

My attitude is, I don't really care what you call it or how you decided that is what I have, just treat it. I have mild IC and he treated it. After the intake surveys strongly suggested I had IC he mixed me a "coctail" (I told him somehow that sounded a lot more plesant than it would actually be). I could tell immediately that the instill was the answer to what ever anyone wanted to call it.

Since then I have had cysto and the "blood-shot eyeball" was ovbious, even to me.

Post here indicate to me that the "type" of MD is not as important as the "concern" of the MD. If your MD is concerned he/she will work with you and if they don't, give someone else your money.

IC is not in your head. It is a medical condition that can be treated. If you have looked around this forum I am sure you know how many different "faces" IC has. And it seems that there are just about that many treatments.