Introduction and doubt

[zipher]

First off, my name is Lesley and this is my first post. I'm 25 years old and live in Nashville, Tennessee. I have not been diagnosed with IC.

I cannot remember a time in my life when I didn't struggle with kidney/bladder/uti infections. I guess they started when I was around 11. For the first 8 or 9 years, I would get an infection at least 5-6 times a year. Over these last 6-7 years, I get them at least 3 times a year. I've been hospitalized 3 times due to uti's or infections. I never had the normal symptoms as far as these infections were concerned. It never hurt when I peed and the frequency was never amped up. When I have and infection, I get fever, chills, and vomitting.

Lately, however, I have started having episodes of extremely painful urination. It stings right towards the end of my stream, then continues for hours afterwards. I would usually just take cranberry pills and drink water, the burning would stop in a couple of days. The last instance of burning, however, occurred right after I had been diagnosed with a kidney infection. I was afraid my course of antibiotics hadn't worked, so I went back to my dr. He did another urinalysis and everything was fine. So, he mentioned ic and send me to a urologist.

I went to the urologist this last Monday, the 11. He examined my bladder manually, and told me he wanted to perform a cystoscopy, hydrodistention, bladder biopsy and ct scan while I was under general anesthesia. He told me that this might give us answers as to why I get infections so often and what we can do to make them stop.

My surgery is sceduled for next Thursday, the 21; a week from today. I feel scared, but also guilty? I feel like maybe I'm doing something that I don't really need. I'm terrified that I'm going to go through this ordeal and nothing is going to be resolved..no questions are going to be answered. I'm scared all of this will be for nothing, thus making me feel even worse.

I don't quite know what I want from this community. Validation? Comradery? No clue. I'm just so scared that I'm making the wrong decision and going through and unnecessary procedure.

Can everyone tell me their thoughts? Maybe what to expect next Thursday? Should I go through with this?

Thanks so much for taking the time to read this and letting me vent a little!

[Margot62]

I feel your pain!

Hi and Welcome!

I'm new here, too and just had my cysto done yesterday. I, too, worried that I was doing something unncessary and perhaps that I was making myself worse by going through a procedure. After all, almost half of people with IC have normal looking bladders.

The cysto hurt me--my urethra is really sore and it was unpleasant but not the end of the world. My doc didn't diagnose me with IC just yet---as IC is a diagnosis of exclusion---they have to check for other things first. I've had a sonogram of my kidneys--which looked fine--and am scheduled for an MRI of my pelvic region in a week or so.

I think pelvic pain has been lumped into an IC category and some doctors are just weary of saying everyone with pelvic pain has IC. There are some IC specialists, like Dr. Parsons in San Diego who recognize that IC is under diagnosed. You should read his interview here at this website under guest lectures.

When I look at my own history with UTI's, etc,. it seems to me that I closely follow a typical IC course, but I've resolved to let my doctor run his course of tests and make his own conclusions. Right now, I'm on a course of valium for two weeks to see if my pelvic muscles might settle down. It worked for a few hours, but right now, as I sit here, I can feel the burning start again.

My point is to just run the course here. They have to exclude other things before they can diagnos IC and you have to stay the course with them. If, at any point, you feel you aren't getting the right care or diagnosis, then find a doctor who specializes in IC and go there.

I think this whole IC thing is a mystery---so many different symptoms and complaints. It isn't cut and dry, like a diabetes diagnosis where the disease is easily tested and clear cut.

This web site is a wealth of information. Read everything you can here. Be your own best advocate.

I hope this helps. Best of luck to you.

Margot

[SandyRN]

to the board!

I just wanted to let you know my experience with the hydro was a positive one because I finally got some validation that I had an illness, even if I didn't look sick. I came out of the procedure with a positive diagnosis, and after I recovered I really did have some much needed relief in my bladder. I'm considering doing another one soon.

I'm glad that you found us...this board has been a great source of friendship, validation, etc...all the things you're hoping to find.

Check out the patient handbook, there is a link at the top of this web page that you can click on....read, read, and read some more. Never think you are asking a stupid question because there is no such thing.

Let us know what you decide and what comes of your procedure.

Hugs, Sandy