Is hydrodistention the only way to know for sure you have IC

[Nan2468]

I'm scheduled to have hydrodistention this Friday, 8/29. I had an office cysto last summre and it said I was fine...I've been reading that the hydro is more precise...At night espeically I get very fearful about the hydro procedure...

Could someone here answer my above questions...thank you...

I also keep wondering if maybe I just need to change my hormone meds...I'm through the change I guess at 50 not having a period for about three years now...

[ICNDonna]

Some doctors will diagnose based on symptoms. Some use the potassium sensitivity test. Others prefer to do a hydrodistention. I was diagnosed by hydrodistention back in 1975 --- and I have found that hydros significantly help ease my symptoms.

Just remember that it's your body and your decision.

Donna

[Nan2468]

Donna,

Did you have any complications with your bladder the years following your hydrodistention?

[Briza]

Though there are some risks having the hydro, that is the case whenever undergoing any invasive surgery. I am one who DID have rare and serious complications following my hydro, but they were resolved within a few weeks and I returned to my pre-hydro level of symptoms with no permanent damage done. Hunner's ulcers were found and burned off during my hydro, and since then I haven't had the sharp stabbing double over in pain symptom that I had before the hydro, so I'm guessing it was from having the ulcers burned off. Other than that I did not get relief from my other symptoms of pain, frequency, urgency, burning, etc.
Donna is correct...there is also the Potassium Sensitivity Test and it seems that some doctors are now using a more conservative approach by diagnosing based on symptoms and how well a patient repsonds to standard protocol IC meds and treatments and diet.
Ultimately it is up to you to decide on how you would like to proceed. I for one, wish that I had been offered the PST; however, my uro just about promised me that the hydro would give me not only a diagnosis but also improve my symptoms...some patients do report an improvement in symptoms but this does not seem to be the case for the majority of patients. Unfortunately there does not seem to be "the test" to diagnose IC. It is basically a diagnosis of exclusion...some doctors may require you to submit to a hydro or PST before giving the official diagnosis and treatment, but others may diagnose using the PUF survey and based on symptoms.
Best wishes...I hope that whichever route you decide to take turns out to be the best one for you and that you find relief soon. Take care,Bri:)

[Millicent]

I had the hydro and loved it. I had no issues and no pain afterwards. It really helped diagnos me becasue I do not have many of the "usual" symptoms of IC. I was in and out in less then 2 hours and only under for 30minutes tops.

[ICNDonna]

I did not have any complications and hydrodistentions help me live a normal life. I have had over forty hydros in my 33+ years with IC --- the last one was in May and I'm still doing well.

Donna

[Karen M]

I am also having a hyrdrodistension next week. In the office the NP did the potassium sensitivity test to confirm the diagnosis of IC. I am now scheduled for this procedure, from what I am told, as another diagnostic tool and also my doctor said that it seems to relieve the pain for some people. I hope everything goes well for you.

[lisabar36]

I was also diagnosed by a hydro. I have only had 2, and am having a 3rd one, but they have helped me with my symptoms. I am over do for another one. I am actually doing so well on elmiron right now also. I am almost at a year of being on it and I really see alot of improvement. The hydro gives them a better look at your bladder while its distended. The doc told me that an in office cysto does not show IC. That is just what I was told. I never had any complications after, just discomfort for several weeks and then I felt better then before. Good luck and I understand being scared, I always am with mine also. It is scary for any procedure. Hang in there.