Is hydro best route to Dx and short poll

[shortstuff]

Hi ladies, I have way too many questions. Based on what you know, is cysto w/ hydro the best way to determine whether or not you have IC? This is the one thing I've not had done and am debating asking my doc to just do it so I can get some closure. Right now I have a DX of PFD based on a clean cysto (no hydro), urodynamics which showed a very large capacity and problems w/ my muscles releasing (PFD/retention). I have only had symptoms for 14 months now.....

Here are my poll questions:
How many of you were DX w/ IC by simple cysto?
How many had a clean cysto but were diagnosed after cysto w/ hydro?
If you never had a cysto and went to straight hydro I'd like to know that too, because do you ever wonder what the doc would have seen if they didn't distend your bladder? Would the evidence have been there or not?

Thanks to everyone!!!

[jp1272]

I had an office cystoscopy done last October and because my bladder looked fine during that procedure, I was told I didn't have IC.

I then changed my urologist and was told - following a consultation - that I very likely have IC, but in order to prove it either way, I would need to book a cystoscopy with hydrodistention and biopsy.

I went through with that last week and the outcome was: I have glomerulations and mast cells. Therefore the diagnosis has now been confirmed and I have IC... 17 months and 8 specialists later.

[ICNDonna]

Mine was diagnosed by hydrodistention and biopsies under anesthesia. When I had my cysto in the doctor's office my bladder looked completely healthy and normal. When it was distended, the IC showed itself.

Donna

[shortstuff]

I don't understand why doctors don't do hydros then....I consider my urologist extremely intelligent and professional but wonder why she doesn't do hydro if cysto looks clean and there are possible symptoms, even if just to rule it out.

It sounds like it happens frequently enough that the cysto is clean but hydro is not....did your docs say they saw absolutely no indication it was IC from the cysto? (From what my doc said she would have had a slight indication even in cysto, even if not obvious). If cysto showed absolutely nothing then what led them to do hydro - your request, symptoms, etc? Gosh, I wish I could compile all the info from so many patients and make sense, don't you?

[jp1272]

Yep, my then uro told me that my bladder looked absolutely fine after investigating it for 2-3 minutes. No hint or trace of inflammation, therefore I couldn't possible have IC.

He was the same doctor though he told me I didn't 'look' like somebody who would have IC after I first voiced my suspicions. That somewhat unqualified remark actually set alarm bells ringing, but I gave him the benefit of the doubt.

I left that day with a diagnosis of (tiny) kidney stones and a bad back... Basically, all my bladder symptoms were attributed to those minuscule stones he saw on an x-ray and a slight curvature of the spine ('the pain from that radiates to your bladder'!)...

I change to my current uro and the minute I said to him: 'You are the 8th specialist I am seeing, I think I have IC', he replied 'If I am the 8th one, I am sure you do' ;-)

Anyway, standard procedure in the UK seems to be hydro and biopsy, there seems to be no way around, you have to go through with that in order to get a confirmed diagnosis. My 'problem' is that I don't suffer from certain classic symptoms like frequency, so it was difficult for me to convince 7 doctors that I wasn't just a hypochondriac.

I say go for the hydro, the result will be a strong indicator for or against IC. I am not sure a biopsy is that necessary, although I now know that I have mast cells too which further supports the diagnosis.

[Zygala87]

Eight Doctors! For goodness sake. Lets hope more Doctors receive better education about IC. I read someplace that our newer Doctors are learning much more about this problem. When my OBGYN diagnosed my IC with a HYDRO I went to see my PCP who told me he never heared of it before. He jumped onto his computer and looked it up. He was very kind and told me to let him know what he can do to help me stay as comfortable as possible. He gave me pain pills and said to come back to him at anytime. I wish all Doctors were this smart and caring. I rarely take the pain pills but it is comforting to know they are with me should I go into an eight to ten of pain. I personally have had no good advice from any Urologist. I'm sure others have found some great ones. I like dealing with Doctors who have known me for years. When I say I'm in pain he** they believe me and do their best to help. Wishing only the best for you. Hugs, Ziggy

[ScrabbleMom]

My uro doesn't require hydro for diagnosing IC. He said that IC bladders can look normal, so the test just doesn't prove anything. I only have to have a cysto because I have blood in my urine. He has offered cysto for the therapeutic effects, however.

[OrlandoP]

I don't understand why doctors don't do hydros then....I consider my urologist extremely intelligent and professional but wonder why she doesn't do hydro if cysto looks clean and there are possible symptoms, even if just to rule it out.

It sounds like it happens frequently enough that the cysto is clean but hydro is not....did your docs say they saw absolutely no indication it was IC from the cysto? (From what my doc said she would have had a slight indication even in cysto, even if not obvious). If cysto showed absolutely nothing then what led them to do hydro - your request, symptoms, etc? Gosh, I wish I could compile all the info from so many patients and make sense, don't you?

One of the reasons all doctors do not do hydros is that many understand that there are actually a variety of "ICs" out there. My doc, for instance, believes that hydros do not indicate anything particular in IC patients, as many non ICers also show gloms when hydro-ed. It is not the primary tool for ALL doctors. That does not mean it is obsolete, but the understanding of IC is changed. There is no one sure-fire diagnostic tool. It is a disease that is often diagnosed by ruling everything else out.

In my case, my doctor said my IC was "hypersensitive bladder". I believe her. I have a nerve dysfunction.

The different varieties of IC explain why treatment can be so hit or miss. For me, the opiods are the only thing that works on pain, after many years of attempting tricyclics, atarax/vistaril, topamax, neurontin, etc.

[L. Thomas]

I was diagnosed by a simple pain survey and conference about symptoms. Later I had a cysto for evaluation of repair of a vault prolapse. This cysto confirmed IC.

Dr. Dell, along with other well known IC MD's, has compelted a research study based on comparison of different methods used to diagnose IC. The study was supported by the Urological Research and Educational Foundation. The project was conducted with more than 5000 people who had been diagnosed with IC. According to his findings using reliable and valid pain/bothersome symptoms surveys with patient conference diagnoses IC as accuately as other more invasive procedures. This is the article:
http://www.mypelvicmedicine.com/files/2002_IFPM.pdf

[Goldfinch]

All patients are different and all doctors are different.

An in-office cysto is done to rule out bladder cancer and bladder stones and to give the uro a first look inside the bladder. It is the first test a uro does for just about anything, and is not diagnostic for IC. It can show visible irritation that could be the result of IC or simply of an infection. Or it can show nothing even when a person has IC.

Some doctors are willing to diagnose IC on the basis of symptoms and response to diet or even response to treatment. Some doctors use the Potassium sensitivity test and some don't like it; it CAN be indicative of IC, but not foolproof. Some doctors, if they suspect IC or see irritation when they know no infection is present will recommend the cysto w/hydro.

The cysto w/hydro, done in a hospital setting under general anaesthesia can confirm the presence of glomerulations (pinpoint bleeding), hunners ulcers or mast cells. And in some cases it can be therapeutic and provide relief for a period of time. My own uros attitude was to try oral meds first to see how my body responds before doing any invasive testing. My in-office cysto showed a healthy bladder, and I had a CT scan for stones or tumors outside the bladder. I have not had the PST or a hydrodistention.

So...there is no one-size-fits-all test, approach or treatment. You find a uro you feel comfortable with, who wants you to be symptom-free, who is open to all treatment options, who is happy to have a smart patient that asks questions and who likes a bit of mystery in this life. Sometimes it can take a few tries before you find one, but second and third opinions are never a bad thing.