Is Testing Necessary???

[braykittie]

Hi
I am new to this group, but not to the discomfort of IC!
I started having urinary urgency in my late 40's with repeated episodes of "UTI's" that weren't UtI's. Now, at age 59, I have been living with all the symptoms of IC for the last 3 to 4 years, and on medication (Elmiron, Prelief, Atarax,Soma and Pyridium on occasion) to help control these symptoms, but have never been tested.
I have not seen a urologist, but my Family Physcian has been very helpful and is not stingy when I want to try a new drug. We have discussed the testing, but it sounds very painful and even the Hydrodistension can be inconclusive and many times comes back negative even when the person has IC--So Why Bother?
This may sound like a dumb question, but I just don't see why I should put myself through these procedures. I have read the post with the long list of other potential diseases, are they the reason for testing?
So, why did you have the test or tests done?
Thanks for any information you can provide.
Braykittie

[~*~Christine~*~]

:welcome:
hmmm I don't think it's necessary if you're already being treated for it and it works for you.
Though, I, and many others, find that the hydrodistention used to diagnose IC helps to relieve our symptoms, than again, for others it makes theirs worse.
I guess, in your case, getting a physical diagnosis is a matter of choice, not necessity.
I got tested because the urologist I was referred to see what the cause of the pain was. In the end, had I not had the hydro/cysto I wouldn't have had all the ulcers and scar tissue fixed, so I probably would have ended up having to have my bladder removed from the damage when I was 16. So, in my case, it was a good thing

[ICNDonna]

The reason testing was very important for me was that my father had bladder cancer and had symptoms identical to what I was experiencing. It seemed vital to me that I rule out bladder cancer.

The up side is that hydrodistention significantly relieved my symptoms for many months.

Donna

[Janie Miranda]

"Sept. 17, 2005
IC In The News! - What is the value of cystoscopy with hydrodistension for interstitial cystitis?
The role of hydrodistention continues to lessen as researchers around the world determine that it's results are less than optimal. In the September issue of Urology, researchers Ottem & Teichman (Vancouver, Canada) released findings from their study of more than 80 patients. They concluded that cystoscopy with hydrodistension provided little useful information above and beyond the history and physical examination findings. As therapy, 56% of patients reported improvement, but the duration was short lived"

This was from the front page of the ICN website. I can see your point about not wanting to do the testing. I think the only reason I would want to do it would be to rule out cancer or if you have a really small bladder capacity - sometimes it helps stretch out the bladder for a while. (I have large bladder capacity still so that is one reason I would not want to do it unless I was worried about cancer or something.)

I know it is a tough choice to make. Are you meds working for you?
jane

[Ginny]

Basically it is cancer they want to rule out.
I have to say if I were in your shoes and did not have a reason to see a Urologist because the primary is helping you I don't think I would go for the test. Just my opinion.

Ginny

[SrMaggie]

I would tend toward not testing also, but that is just me. Sometimes my not wanting testing is strong denial that I am aging and so is my body. I also have the fleeting thoughts that what I don't know won't bother me.
In another vein, we have students at our school who exhibit signs of autism and have been tentatively diagnosed. HOwever, the parents can't hear it yet. They aren't ready to accept it. Just because there is no diagnosis accepted, we still work with the symptoms and try to help them. If you are being helped adequately by your primary care, it would seem that there would be no need for testing. Some medical persons are so adept at making diagnoses because of the other circumstances, that testing is an added burden.
Hope you feel better and that your physician continues to keep you up and running.

[braykittie]

Thanks for replies.
My meds are working and if I have a flare up I have back ups. I love this forum and have learned so much in a very short period of time. There are a few meds mentioned I am going to check out.
My other lifeline is the IC Association site. That site was a God send.
Christine I am sorry you have suffered with this disease at such an early age, but glad you found answers. I can't imagine what it was like for a child to try and explain this miserable condition.
Take care one and all.
Jane

[~*~Christine~*~]

Thanks Jane, and I agree, this board is amazing :)