UTI symptoms since I was 15

[soymilk]

Hi, I'm new here but I've been lurking a while. I've been having what was diagnosed as "recurrent UTIs" since I was a teenager, but the cultures always show up negative but with elevated white blood cells. Usually my symptoms come and go, with anywhere from a few weeks to a few years between flares. I'm 23 now, I can't believe that I have been having this problem EIGHT YEARS without any help.

I have had two urodynamics tests and they both came back normal except for the fact that I was clenching/pushing too much. The problem was that they were literally the two most excruciating experiences of my life by far.

Right now I am having my second of what I consider bad flares. Pain level is 9/10, I have to wake up multiple times in the night, constantly take Pyridium, I can literally feel my urethra spasming after I pee, and severe urgency (sometimes I don't make it to the bathroom). The first one was about three years ago and lasted a few months. I am on week 3 of this one now.

Over the years I went to three urologists in the same group. All of them insisted on a cystoscopy before they would treat me, but I am unwilling to have anything else stuck up my urethra. One of them told me, "Well if sex hurts, you should stop having sex." Another one told me that my problems were all in my head. I have an appointment with a new urologist in a different group, but it's not until June 8 and I somehow have to survive until then. Wish me luck!

[ICNDonna]

I hope you will feel more comfortable with a different doctor. Many will want to see what's going on in your bladder --- some problems are visible without doing a hydrodistention. A cysto only takes a very few minutes and the discomfort should be gone within hours.

Sending encouraging hugs,
Donna

[statesboro]

I figured I would give you a welcome first of all. I am a male, but I was diagnosed with IC back in 1997. Yep! I did notice you will be going to a different urologist. That one might want to do a cystoscopy as well. You might have had more treatment if you had one done before.(though you don't want one) Regardless, none of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! We all know IC sucks, but life goes on. Oh! I did notice you go by soymilk. OK. I don't know why. It does seem like you have got IC as well.

[me123]

I was in the same boat with the same type of symptoms around the same ages. I was recently told that mine is likely two things, but did not rule out IC. For one I have spasms in my bladder muscles so they put me on VESicare, which has worked wonders (muscle relaxer). The other part they think I am allergic to a dye or food perservative, which eventually triggers the fareups.

I was not thrilled about the cysto either, but it is mild discomfort compared to a flareup and they can also check to see if there is any permanent damage to your bladder.

[soymilk]

Thank you for the responses everyone.

I am very scared about doing a cystoscopy because of my horrible experiences with urodynamics. The first time it took me half an hour to be able to void the solution back out because it's hard for me to go to the bathroom with my mother, two nurses, and a male doctor in the room! The doctor got very impatient and I started crying. Afterward I got a raging UTI.

The second time I was older, but when they tried to put the catheter in I was so clenched up that it took 4 or 5 tries and there was blood in my urine. I was in so much pain that I was sobbing hysterically and wet myself in the car on the way home (in my friends car, after taking pyridium... How embarrassing!!) The doctor refused to give me pain medicine or write a note so I could take a few days off work because he said "urodynamics testing is not painful!"

The worst part is that since both of them were normal, the doctor used it as basis for saying my problem was all in my head.

I'm scared it's going to be like that all over again. They showed me the scope and it's so much bigger than the catheter! I can't imagine it won't be excruciating.

[ginaaa22]

If they insist on doing a cystoscopy ask if they will do one with a hydro under general anestisia. I had one done in jan and although I flared for 2 weeks afterwards it was reassuring to know that there is something there. My bladder had glomulerations all over it. Also I was asleep so I didnt feel the catheter go in or out. It was difficult afterwards to pee but I took pyrdium to help with that. Before this procedure I had the PST done for my first official diagnosis of IC and 50+ bladder instills which are not fun.

Hopefully you can find a new dr who will be more understanding. Finding the right one can make all the difference in the world when dealing with a chronic illness.