process of diagnosis

[ashleyf56]

hi-
i'm 26 years old and in the process of being diagnosed. to be honest, i am quite the mystery to the dr. at this point. my odyssey started in 2001 when i came down with a really nasty uti (positive culture) that was treated with antibiotics. when i went back to the dr. i had a neg. culture but still lingering pain. it took about 5 months to completely go away. i lived completely normally until then in 2005 i got another uti (positive culture), same story: antibiotics, negative culture, lingering pain. it took about 4 months to clear up. i was totally fine for another year until i got another uti in january. now i am in pain again. i don't have the urgency, frequency, or nocturia, just a burning sensation after i urinate which sometimes lingers. one dr. says ic another is skeptical because of the positive cultures and the fact that this is always set off by a uti. i know you guys aren't doctors but any advice you might have would be awesome. i am currently taking elmiron 100g 3xday. a suppressant dose of antibiotics, and lexapro. i am also trying the ic diet even though i have never experienced any food reactions (except for juices and soft drinks--ouch).

ashley

[meme]

Its very possible that you could have IC and that an infection could be setting it off. If I get a UTI I can guarantee that I won't feel "right" for about 2 wks, even after the infection is gone, and nothing seems to help to get the flare under control then. The fact that juices and sodas bother you is another sign. Have you had a hydro or cysto done yet? I had one uro diagnoise me just by my previous experiences and my current uro did a hydro/cysto to make sure. Either way it can't hurt anything to try the diet. I'm on Elmiron too. It took about 4mos to see any results but now I'm pretty much in remission. Good Luck-Hope you get to feeling better.

[mellusk]

Your story sounds a lot like mine. When I was 18 I started getting uti's almost annually, then last year I had three back-to-back in about eight months. The last one just seemed like it never went away even after my cultures were coming back negative. Finally, I saw a urologist who dx'd me based on my symptoms after my hydro showed nothing. The diet has helped - my big issues are with artifical sweeteners (bad bad bad), colors (will do it every time), and, to a lesser extent, soy and preservatives. You may be someone who doesn't have a lot of food triggers, but trying the diet out for awhile is a good start. I've only been on the elmiron for two months, so I can't say that it's helping or will help yet, but I've have a lot of success with cutting those things out of my food intake, adjusting my stress management, yoga, and physical therapy. I wish it didn't sound like you had IC, but if you do, you may have caught it early. Good luck, and check out the site- there's really wonderful info and support here.

[ashleyf56]

thanks

thanks for the replies. i did have a cystoscope in 2001 and the doctor didn't see anything. i think what is making the dr. hesitant to diagnose me is the fact that i can go years without any symptoms and eat/drink (orange juice and soft drinks galore) and do whatever i want during that time. she said i was pretty a-typical of an ic patient. this is getting so frustrating, i just wish they were able to figure it out either way before i go nuts. i am also trying the prerelief. just bought it two days ago. i haven't really noticed anything.
another question- when the dr. refers to "spasms" I am not exactly sure what she means. My symptoms are usually burning upon urination and the burning sometimes doesn't go away or will go away and come back. Is that a spasm or just an irritated urethra?

thanks!

[meme]

From what I take of it, spasms are when your bladder clenches up all the sudden causing sudden pain and/or urgency/frequency. I have those sometimes and they suck. Its like out of the blue my bladder is killing me. When I have those it usually takes about an hour or so before I feel my bladder slowly releasing itself.

[ashleyf56]

spasm?

i don't think i am having spasms. my pain is entirely in the urethra. when i had a pelvic exam there was no tenderness in the vacinity of my bladder.
this is so crazy. thanks for the help. i really appreciate it.

[smcclafferty]

You may have atypical IC, which is IC without the "telltale" signs of glomerulations and/or ulcers.

[ihurttoo]

Since your Drs. disagreed after you had a cysto/hydro, have you had a PST (Potassium Sensitivity Test) done yet? If not, I would definately ask for one. It is done in the Drs. office and only takes a few minutes. Alot of ICers are d/xed just by having it done.

Of you havent started the IC Diet yet, I would also definatly give it a try. It might help you with the burning, and if you dont have IC, it wont hurt you. Here is the link to the Patient handbook. You will find the diet there. http://www.ic-network/handbook/

In the meantime, you might ask your Dr. to r/x a med like Urimar-T. It contains an anti-bacterial to help prevent UTIs and also has something in it that turns your urine blue that helps to keep it from burning when you urinate. It also contains an antispasmodic that will help if you do start to have bladder spasms.

I hope they can d/x you soon so you can start meds and treatments for whatever it turns out to be.

Hugs,
Amy