Why didnt they do hydro first?

[angelgirl]

When I was officially diagnosed, or so I what I thought, they gave me a potassium test. That with all the symptoms Ive had they said IC. If a hydro is the only real way to find out if you truly have IC why wouldn't a URO do that first????????

I'm kinda ****** because I'm thinking why didnt you just do that first. Somehow now in the back of my mind Im wondering what if I don't have it and they say its all in your head or we dont know what to do for you......which is what I heard years ago before I finally found a specialist.

They did instills and they killed me so now they want to do hydro. My pain hasn't changed any, its Im just sick of dealing with it. When I was diagnosed I only used ibuprophen. IM JUST tired of the pain so I wanted to try other treatments.

Sigh..............

[icjen]

Hi angelgirl. I think alot of doctors are starting to lean away from the hydro for dx. I was also dx'd based on symptoms, potassium test, and lack of other causes. I did later have a hydro to try to relieve symptoms, which did futher confirm my dx, but it did not make the dx. There really isn't any guarentee that the hydro will confirm IC. Some people may actually have it, and not have the pin point bleeding, or vise versa.

I wish I could tell you maybe you got the wrong dx, but I can't. I would wish that for myself too!

I have learned from the boards that Ibuprofen is acidic and can cause an
increase in symptoms for alot of ICers. Some can tolerate it though. I think Tylenol is pretty safe. So, maybe if you happen to notice your pain not changing or actually getting worse after taking it...it might be the reason.

Some people have found great relief from the hydro. I hope you get to be one of them.

Wishing you relief soon,
Jen

[rosesitty]

Hi Angelgirl - I actually never had a cysto/hydro or PST test. My IC was diagnosed by an in office cysto and my very common IC symptoms. 2 1/2 years ago, my IC was significantly kept under control with an occasional instill and as needed usage of Urelle and Sanctura. Four months ago I had a flare and then the mother of all flares on top of the flares. We can't get things to settle down, and I'm beginning to wonder if a PST test or hydro is going to be necessary to solidify the dx and see if things have progressed.

[MarthaB]

:) the hydro did not diagnose me, Jen is right a lot of uro's prefer not to diagnose with hydro's because they can cause bleeding too, so it's kind of confusing, I am going to talk to my uro to see if he can do the pst test for me, but apart from minor inflamation and a small bladder he didn't see enough to dx me with the hydro,

[littlemyrn]

I had the hydro/cysto done for my diagnosis. They were going to do the pot. test in office, but after looking at my urine culture, there was such a large amount of blood, she said she had to go in and be sure she didn't see signs of cancer. I was so scared, the scope show true signs of IC and a large amount of scare tissue, that was in 2004, my new URO wants me to have another, because my symptoms after instills, PT and Elimiron have not improved. So she wants to go back in and look herself and also from reading on the boards, the hydro does help and people get them every now and then. I had the Urodynmics test done this week, OH MY GOSH, the pain it caused me, I still haven't recovered, it showed after 2 oz. I had the urge, then 300 cc. was all I could hold, but then they tried to go further, got it up to around 400 or so and I started to cry so that they me void. Luckily, my doctor was sure that I had pain meds and told me to go home and take them and take a warm bath. I also have Vulvadynia (? spell), so that made that flare also. So anyway, just hang in there. If the pain gets to bad call your doctor.

[SharonA]

Hydros are also used so the uro can take a look inside your bladder to see what is going on in there. They can also take biopsies from the bladder wall and urethra. A cool part of having a hydro is that pictures can be taken by a small camera. If you decide to have the hydro done (no one can force you do have this done), ask the uro to take pictures because you want to see what your bladder looks like.

[Briza]

I think it's common to second guess any procedures that we have had done. I know I do. I don't tolerate pain well and always regret any painful procedure, even if it were necessary. It's probably my form of denial.
I can tolerate ibupofren, and it works great for my menstrual pain. However, it does absolutely nothing for my IC pain. I take Tylenol 3 for that. I don't have to take it very often now. When I do take it, it seems to break the cycle of pain and my other meds work better.
Angelgirl--are you taking any other meds like Elavil and Pyridium? They have helped me the most.
Best wishes

[angelgirl]

Thank you all for responding. I always feel better and encouraged when I hear from you all.

I have sleep apnea so I cannot tolerate elavil very well. It made the apnea worse and I was waking up with migrain type headaches.

I pyridium and urised but never found them to be much help. I will try them again.

I still have a couple of weeks before I even see URO regarding hydro, so I will continue to read and pray about it and talk to you all :)

thanks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[emilyrose197377]

Hyrdo isn't the only way to test you for ic . the pst can also dxed you with Ic.