In denial

[LHR1001]

Hello all-
I did one of these things when I was pregnant with my daughter and found the community thing to be very helpful with all things confusing related to that. So I thought I would give it a whirl with this new diagnosis as well.

I am 33 years old and, to be honest, am not real sure what is going on. As a kid I had numerous bladder infections. Doctors always attributed it to one of the many ways that a kid can get a UTI and sent me on my way. The issues always went back to a normal feeling for me. Normal has always been a sort of constantly irritated burning feeling in my urethra. Of course I also rode horses so constantly irritated could always be attributed to that, and that is what I have always done. Starting last summer, I started down the constant UTI path again. But this time the symptoms were more persistent and acute. I was evaluated for ovarian cysts (yes, but not abnormal), UTIs (occassionally, but not always), endometriosis (negative), pregnancy (also negative), chlamydia (nope), gonorehia (sp?) (also nope). Finally, a couple of months ago, again after feeling like I had a UTI and not, my GYN suggested I be evaluated for IC. I didn't do it then and the symptoms went away (to the "normal"). Well, last weekend the pain was bad enough when I peed, walked, sat, thought that I went back and said I would be evaluated. Turns out I did have a pretty bad UTI, but then they also did the PUF questionairre (scored 16) and potassium sensitivity test. Well, that experience had me screaming as soon as they started and it was a good 10 minutes before I felt like I could sit up. Diagnosis was IC.

I was started on Elmiron (2 capsules 2x/day), told about the diet (which will probably do wonders for my aging figure, but wreak havoc on my happiness) and started on instillations (2x/week for 3 weeks, then 1x/wk for 5 weeks). They also gave me Macrobid for the UTI.

But here I am in denial. Was the K+ test positive because of the UTI or really the IC? Does the Elmiron (at $60/mo AFTER insurance) really help enough to be worth it? What am I supposed to feel like? Is the constant irritation/burning that I have felt all my life (and until last week thought was normal) not normal? If it isn't, what is? Sex has always hurt for the most part, but I just thought that was the way it was - has it been IC?

I sort of feel like I am spending a lot of money and don't know what the prize is at then end. It is like a big biology experiement but it is me in the petri dish. Can anyone tell me what feeling "normal" is and if what I am being told to do will get me there?

Thank you for your help. You all seem very nice in your posts.

[TriciaS]

Hello LHR,
I feel your pain reading your post. I too rode horses all my life and have had UTI. This time I was peeing blood and spasms really bad. I felt no relief from the Elmiron and don't really want to take a drug all my life so I stopped taking it. I am trying diet for now. I cut out Coke compelely. I miss the caffeine. I think you are going to have to try different things and see what gives you relief. The bad part is there aren't too many people outside this group that understand what we are going through. I hope you find some relief soon. There are people here that have had more experience than me as I have been diagnosed for about a year and a half. Good luck and let me know how you make out.
Tricia

[Katie14]

Sorry you're feeling so confused. I know what it's like to be in denial after being given the IC diagnosis. It sounds like your doctor has ruled out a lot of other problems that could cause your symptoms. I can identify with the pain you had recently with the UTI. An infection on top of an already unhappy bladder/urethra can feel pretty unbearable.

You asked if the K+ test could be positive because of the UTI. Did you have it done at the same time you had a positive test? Info I read on Medscape said that there can be increased epithelial permeability with acute bacterial cystitis and that PST testing should be delayed until 6 weeks after successful treatment of an infection.

The PST is just one of the pieces of the puzzle doctors can use to make the diagnosis. Some go by symptoms alone and the PUF questionarre instead of doing the more invasive tests. I hope you'll get some relief soon. You'll get lots of support here.

[VickiB]

Hi LHR,

I'm not sure if the results of your potassium sensitivity test could be influenced by a UTI. That's an interesting question and I'm curious of what others might think.

Your story does sound much like mine. Numerous UTIs as a kid. Lots of time horseback. (I wonder if that helped cause those UTIs?) Then later what I thought were UTIs that seemed to come & go on their own, while urinalysis came back negative for infection. Even my 'good days' still meant some degree of urethral burn and the constant sensation of knowing I had a bladder.

Looking back, I see it was IC all along. And I think the way my symptoms came & went was likely related to my diet at any given time. I have to say the diet did wonders for me and is still my first line of defense in living with IC. Your thoughts that the diet will wreak havoc on your happiness is a feeling shared by most of us! I remember printing off the list from this site and wandering around the grocery store feeling pretty sorry for myself! I've since found that the actual food & drink I must avoid make up a short list, so it turned out to not be as bad as I'd expected. I did find that the list I received from my doctor wasn't nearly as good as the one in the handbook on this site. Also, it made no mention of additives and such in prepared foods that I've learned are problematic for me.

I bet most of us with this IC have the petri dish feeling, especially in the beginning of the journey. I mean, it seems you get given a lot of "We don't really know", "This may be helpful", "We can try this or that...". There don't seem to be many guarantees. And yep, sometimes I wondered if I wasn't literally flushing money down the toilet! But I do want you to know that most of us do find our way back to a 'normal' that is way better than when we were first diagnosed.

Glad to have you join us!
Vicki

[ICNDonna]

If you aren't feeling that your doctor gave you a correct diagnosis, it's always okay to see another doctor for a second opinion.

Warm healing thoughts,
Donna

[Sarojini]

If I were you, I would have the PST repeated when you don't have a raging UTI. The UTI can cause your bladder wall to become porous and irritated, and this can lead to a false positive.

It's always possible you DO have IC, but you want to get the most accurate diagnosis possible.

[stacey79]

I don't know about the PST thing, but I am like you in growing up with UTIs and bladder "issues." Didn't horseback ride, though.

The diet is one of my biggest helps as well. It's easier now that I've done an elimination diet and figured out what bothers me. I know most pop and citrus fruits bothered me. I also found that vinegar products do. Figuring it out is the hardest. I used the elimination diet, which basically means you stop eating or drinking anything even slightly risky, wait until your symptoms subside a bit (maybe about a week) and then slowly add things back in one at a time to see what bothers you. It's not fun, but it is helpful. I had moments of standing in the grocery store blinking back tears because I didn't even know where to begin to start. Or standing in the kitchen crying because I didn't know what to make for dinner. I get weepy when I don't feel well!

Unfortunately treating IC is hit and miss. I've been on Elmiron for a couple of years now and my symptoms are more controlled. It can take up to six months to know if it will work, though. If you stay on it, you might check with your insurance to see if tehy do mail order. With my insurance Elmiron costs $50 a month, but if I get it through my insurance mail order, it's only $100 for three months worth.

Something else you might discuss with your doctor is other medicines. Lots of ICers have had luck with oral meds like amitriptilene (sp?) and bladder relaxers like Detrol or Ditropan. I'm a Ditropan girl myself. It has probably helped me more than anything else.

Anyway, you will find a wonderful community of support here. I can't tell you the difference these boards have made for me. They remind me that I"m not alone and there are no silly questions. Oftentimes I'll come on to post a question I have about something small and find there's already a post for it. Also look through other parts of the site, including the patient handbook. It's incredibly helpful as well.

Sending warm thoughts and hugs your way! :grouphug: