Not Sure Yet - Interstitial Cystitis Network Support Forum

Kami · 11-24-2009, 05:34 AM

I'm new here. I was doing some research and found this website/forum. I'm not sure exactly what I have yet but I have a test in the near future (Monday 30th) to find out exactly what's going on.

The back history is this--I went to the GP for what I assumed was a uti. I peed in cup and they told me that there was blood and pus and immediately put me on Cipro for five days. I went back in for the follow up--the urine test that they perform in house said it was cleared up but we realized I was running a low grade fever (99) my usual is 97. I was then put on vibramycin for 10 days.

I was stubborn and didn't take it for a week. My temperature remained. I noticed that I was starting to burn again when I peed. I started to feel over all like crap and started the antibiotic. The burning went away but the constant need to pee remained. It wasn't too bad that it would wake me up though. I thought it was my bladder recovering and didn't think too much about it.

Go back for another follow up last week. Fever broke but I had blood in my urine. Finally was sent to the hospital for a urine culture. Before seeing the test results the doctor put me on Keflex 500mg 4times a day.

Went to the Gyno the following day to have my yearly examination. I happen to mention the "uti" and how it started to wake me up at nights--some times an hour after I went to bed. Had to pee in another cup.

He scheduled me for a Potassium Sensitivity test--which I didn't no much about except that he was going to shoot some potassium up my bladder. I found it involves a cath--does that hurt? I'm scared of getting cathed.

In two weeks I'll have to get an transvaginal ultrasound to see if I have endometriosis.

I'm hoping the hospital finally got the work up for the urine culture. I'm kind of curious to see what will happen with that.

Does it sound like IC? My gyno was shooting me with questions and then questioning the gp about "low bacteria count" whether or not I'm "one of those girls who gets utis cause stuff gets pushed up during sex" and "we'll figure it out." He said that it's odd for me to have it this long.

The last time I had a uti was in 2006. It was cause I held it for so long--to the point where it hurt because I was trapped in a place where I couldn't relieve myself. I got it a second time that year---it was May and then September.

Please help. I'm kind of scared about this Potassium test.

KristyKay · 11-24-2009, 09:50 AM

Hey there!

I just wanted to chime in about the PST. I was diagnosed via that test (Potassium Sensitivity Test) and I have to say that for me it was not a big deal. I have a mild case of IC that was diagnosed very early on. Like you, mine came on the heels of a uti (only the 2nd uti of my life).

I was also nervous about the cath, but it wasn't bad at all. The most important advice I can give you about that is to relax and breathe deeply so that your pelvic floor muscles are loosey-goosey. The more relaxed you are "down there" the easier it slides in. I had my best friend and the nurse holding my hand and distracting me and it was over before i knew it!!

At the time, my only symptom was frequency, but even that has disappeared with a modicum of treatment. I follow the IC Diet and take a couple of supplements. Those 2 things alone keep me feeling great 99% of the time.

Good luck and let us know how it goes!

-Kristy

Kami · 11-24-2009, 10:14 AM

Thank you for your reply. I'll have to remember the tip to relax.

I'm ready for my life to return to normal. I'm so tired of being tired because I wake up in the middle of the night to use the bathroom all the time. Plus the no caffeine thing isn't aiding it either.

So far I have eliminated coffee and alcohol. Actually, pretty much everything with caffeine. I have found that decaf coffee doesn't bother me though and that was kind of comforting for me.

My main problem is knowing whether it is me drinking too much liquids (I carry a 2.2 liter jug of water with me) or it's because of the uti/ic issue.

I've been looking around in little increments on the site so I don't get too overwhelmed. I've been making sure that I go to the bathroom every 2 hours unless I need to go before then.

Calinda · 11-25-2009, 04:36 PM

While you're waiting for the test, you might try more of the diet suggestions also. That's what I did before I've even found out what is wrong with me. You might be able to see any difference in how you feel.

Tests are never fun to have done. I haven't had that done, but I had a similar case of going to different doctors trying to find out what was wrong with me. One thing about awful tests is that sometimes you don't have a choice--"no pain no gain". So hopefully it will relieve your anxiety to know what's wrong with you.

I hope it goes okay for you though. It is really scarry when you don't know what's wrong with you. It's good that you are being pro-active. I'm glad too that your doctors are getting you in for tests fairly quickly.

Kami · 12-11-2009, 04:34 AM

So I have the Potassium Sensitivity test today. I'm nervous.

After finishing the last round of antibiotics, I began to truly believe that I do in fact have IC. As the symptoms didn't get any better. Following part of the diet and severely my water intake has helped some and I'm sure if I follow the diet hardcore it will only get better from there.

Because there are other possible issues involved (girlie issues) the doctor wants to do a laproscopy(sp?), look at the uterus more, and finally do the cytoscopy all at the same time. The ultrasound wasn't very conclusive in the issues and apparently IC and possible endometriosis can go hand in hand he wants to have a look see.

I'm not terribly sure if this is a necessary thing or not. I totally agree with the cytoscopy but not so much with the other tests so much. I'll be talking to him more about it when I see him this afternoon.

Once again...not looking forward to the test. He said that the sooner we catch this and diagnose it the higher chance it is that I will respond well to the treatments. Wish me luck...I'm going to need it.

Kami · 12-11-2009, 12:52 PM

It is official I have IC. I suspected as much. I am still trying to decide if the cytoscopy is still necessary or not after the KCL test. Does anyone know?

The KCL test wasn't too painful. The catheter was what hurt me the most out of the whole shebang which also gave me a false rating of pain so she started to take it out after she administer each fluid. That kind of sucked but it was nicer at least.

Calinda · 12-11-2009, 02:58 PM

That's good that you know what you have. I do think even though initially one goes through the mental frustration of having something wrong with you and the sadness of having to give up certain foods--at least you know what is wrong.

For me too I had a bunch of different tests to rule out other possibilities of what could be wrong. I was glad I didn't have cancer.

I hope you can adjust to having IC all right. It takes an adjustment period and a little bit of mourning. Hang in there.

Kami · 12-12-2009, 05:47 PM

Quote:

Originally Posted by Calinda

That's good that you know what you have. I do think even though initially one goes through the mental frustration of having something wrong with you and the sadness of having to give up certain foods--at least you know what is wrong.

For me too I had a bunch of different tests to rule out other possibilities of what could be wrong. I was glad I didn't have cancer.

I hope you can adjust to having IC all right. It takes an adjustment period and a little bit of mourning. Hang in there.

Thank you. You are right, there is definitely an adjustment period. I was looking at the printout the Doctor's office gave me and I didn't realize the full extent of things that I could not eat. Also, as awful as it sounds--I'm beginning to wonder how much all of this is going to cost.

I'm sure I'll make it some how. I definitely can tell a difference since they used the rescue solution yesterday.