Why does IC have to be diagnosed by hydrodisention

[peaceplease]

I have read a ton about IC and I still don't really understand why it is that it is diagnosed by hydrodistention and not a cytoscopy. Things such as ulcerative colitis can be diagnosed by visualizing the colon via colonoscopy, just as esophagitis can be visualized by endoscopy. Why can these two diagnostic procedures for example visualize tissue inflammation and cytoscopy can not visualize the inflammation of the bladder lining associated with IC? What exactly happens when the bladder is overdistented with water that allows these otherwise undetectible areas of redness, inflammation etc to be seen? It just strikes me as so odd that IC can't be diagnosed solely by cytoscopy? Why is that?

Furthermore, have any members out there with IC had a cytoscopy done and they were able to visualize with that procedure alone bladder wall inflammation and had the diagnosis of IC made by cytoscopy solely?

[ICLori]

Peaceplease, no one can be diagnosed with IC by cystoscopy alone because it is only by hydrodistending the bladder that the telltale, classic signs of IC - glomerulations and ulcers - can be seen. The bladder is different from the esophagus and bowel in that those organs remain relatively open all the time, whether or not they are filled with material - the bladder collapses closed, like a balloon empty of air, when it's not full. In order to really see all the surface of the inside of the balloon, you need to fill it up and stretch it out. That's the same idea with the bladder. Only by hydrodistending the bladder can you see the ulcers/glomerulations, and that is how the diagnosis of IC is made.

Is there something about the hydrodistention that worries you, or were you just curious? I know that everyone here can help ease any fears you might have about the hydrodistention/cystoscopy if you have some anxiety about that.

Blessings, and welcome,
Lori

[peaceplease]

I will not ever have a hydrodistention if I can help it, although I appreciate that it has helped some people with IC go into remission, it is not the route I would want to take if I can avoid it. It is also on its way out interms of a diagnostic tool for IC, and there is a lot of questions as to its usefulness diagnostically as can be read about online and even in articles with the experts on the ICN.
During cytoscopy the bladder is filled (though not stretched) and all sorts of conditions of the bladder can then be diagnosed, but not IC, that seems odd. It just seems very curious and I just can't help but wonder as I have done in the past if all that overstretching and trauma to the bladder wall would cause bleeding, inflammation etc.
Anyway, this is just something I am curious about hearing others opinons on, and as I said I am also wondering if evidence of IC has been seen in folks via cystoscopy alone, I know I have read one ICer did have evidence of IC on cytoscopy alone.
Thanks for your reply!

[ICNDonna]

I don't know the why, but I do know that when I had a cystoscopy in my doctor's office when I was being diagnosed, my bladder appeared to be completely normal and healthy. Yet, when it was over-distended during a hydro, the IC was diagnosed. I am one who is helped by hydrodistention. I am scheduled for either #39 or #40 on February 23rd. My last one gave me relief for seven months so to me it's well worth it.

Many IC patients are diagnosed by a potassium sensitivity test and some by symptoms alone. At the time I was diagnosed (1975) the only definite diagnosis was by hydrodistention.

Donna

[Baba Yaga]

Hydro is also the only real way, as far as I understand, for gauging the bladder's capacity, which is also relevant in diagnosis.

[tigger_gal]

Donna,
My mom and I both was dxed by hydrodestion, your right back then there was only one test to determine IC.. My uro is an ic specialist and one of the top 10 in the us, and he dx's thru Hydro's..

During cytoscopy the bladder is filled (though not stretched)
yes you are correct, during an in office cysto your bladder is not stretched. The worst case of IC can be completely missed by just doing a cystocopy.

[peaceplease]

Hi:
Thanks for the replys. What I keep hearing is what I already understand that this is how you diagnose IC, but what I hoped to hear is more clinical information as to the WHY? Why does it take overstrecthing of the bladder to see evidence of IC? IC Lori explained it to me as she understands it, but it just doesn't make much sense to me, sorry if I seem dense. I mean there is no other part of the body which needs to be stretched to see evidence of inflammation, I understand the bladder is a muscle and works like a balloon, but why isn't evidence of IC seen right there on the bladder wall lining when it is filled with water at a routine cytoscopy? Can anybody really explain this in medical terms? Thanks!!

[peaceplease]

Donna:
You said your bladder looked completely fine at cytoscopy when you were being diagnosed. Have you had a routine cystoscopy since then? If so, what condition does your bladder appear to be in now?
Thanks

[tigger_gal]

I have had about 6 cysto's in office and my bladder looks normal.. when I had a urodymanics test done, my doctor said he had forgotten how very small me bladder was.. it held les then 200 ccs awake, and I retain 70cc's.

When you have a hydro, they also can find out exactly what your bladder holds, my bladder under sedation holds less the 350 cc's in distress, according to my post op paper work.

[ICNDonna]

Mine still looks normal and healthy. Even when I have a hydro, which I watch on a TV screen, when they begin instilling the fluid, it looks good. But when it is stretched, it looks pretty horrible. A healthy bladder is much more elastic than an IC bladder --- meaning it can stretch without the lining cracking. A normal bladder will hold up to 1100 cc of fluid, but my IC bladder shows cracking and bleeding at much less than that.

Donna

[ICLori]

Peaceplease, you may not ever have to have a hydrodistention if you don't want one.

There are doctors these days who diagnose by the potassium sensitivity test, or even (I have heard) just by symptoms alone.

I think part of the reason many of us end up getting a hydrodistention is because sometimes doctors won't help us without a firm diagnosis, so it's like, either do this or you get no medicine from me, or sometimes insurance companies will not pay for treatment like Elmiron (expensive) without what THEY consider the gold standard of diagnosis - a hydrodistention/cystoscopy.

So if you can find a doctor to treat you and an insurance company to go along with treatment, without doing a hydrodistention, then you won't ever have to worry about having this.

But if you can't find a doctor or insurance company to treat you without a hydrodistention for diagnosis, then you can argue all you want until you are blue in the face and you still won't be able to get the insurance company to do what you want, nor the doctors.

So it really just boils down to, can you get the treatment you need to get better, without the hydrodistention? If so, then more power to you. It's always nice when you don't have to have a procedure you don't want to have!

Blessings,
Lori

[rosesitty]

Peaceplease - I have not had a hydrodistention. My uro did a cystoscopy in the office and saw that my bladder was highly irritated and red. She made the IC diagnosis from this and in combination with my symptoms. She is a fairly young uro, and the nurse said that in some ways the hydro was "old school". I'm not a doc, I'm just relating what I was told.

[Ginny]

I had an extremely hard time with a hydrodistension so I would not allow one when I needed a diagnosis. My doctor agreed totally. He did a cystoscope in the office and a biopsy at the same time. I don't remember the wording (it was 22 years ago) but the doctor and all others felt it was positive for IC.

I would not discourgage anyone from having a hydro for a diagnosis but not as a treatment. I know Donna has been helped by them as treatments.

I would rather not explain any further because I do not want to scare someone that needs it done.

Ginny

[Howie'sGirl]

I was originally diagnosed by cystoscopy without hydrodistension, along with the PST.
However, when I moved and was forced to find a new urologist in order to continue treatment, I was given another cystoscopy and was told that I definitely do not have IC. (The period of time between the two tests was about 18 months, and my symptoms had remained constant during this time.)

Of course this caused a great deal of stress for me, since I had finally found a reason for the symptoms that I had been suffering with for years, only to be told that IC wasn't the cause! It was only after finding this site, printing off the information on diagnosing with hydrodistension, and taking it to my new urologist that he agreed to treat me. Since I do get relief from DMSO that lasts for quite a few months, he has agreed to forgo the hydrodistension (since I am afraid to have one).

I have not been able to find an explaination as to why one doctor could "see" the IC and the other could not, and this has certainly been something that has bothered me. One more question I have in this regard is why my urologist has told me that pin-point bleeding and golmerations (sp?) have been found in the bladders of women who do not experience any IC symptoms. I have to say that the fact that he related this information to me, has made me feel that he isn't convinced that IC is "real".

[ICNDonna]

An IC diagnosis is not made just from the hydrodistention; it is made by ruling out other possible causes, as well as symptoms, along with the hydrodistention. My thought on this subject is that if you have a doctor who is willing to make a diagnosis based entirely on symptoms, and if both you and your doctor are comfortable with that --- then go for it.

Donna

[CanadaMel]

I was diagnosed with a potassium test during a cystoscopy, had the hydro 3 months later to see if it would help (I don't think it has). So, you don't have to have the hydro done if you don't want to.

Mel

[peaceplease]

Thanks for all the responses. I do not have to have a hydrodistention to receive treatment. My urologist is willing to treat based on my symptoms and ruling out other possible causes for my bladder pressure and frequency. My gut feeling is that a hydrodistention would not be theraputic for me, and because I seem to have pelvic floor trigger points, I believe it would only cause me to have more spasms and tighten up those muscles even more due to the pain the hydro would cause me.
I was more interested in hydro as the "gold standard" to diagnose. I have read online where woman with no symptoms of IC who have hydros can have redness, bleeding etc from simply the stretching of the bladder.
I don't know. I was just curious if some IC folks have infact been diagnosed with cytoscopy alone.
Thanks