Going for tests/diagnosis on Wednesday

[DoulaSue]

Hello everyone, I'm glad I found this place. I'm a 39 year old happily married woman with two great kids. About 4 weeks ago, I woke up with a very sore bladder, and urinated very bloody urine. My urethra was incredibly sore, as well. I called my Dr. who had me come right in, diagnosed a severe UTI and put me on Macrobid. Took the course of Macrobid, blood seemed to disappear in 24 hours, but I still felt tenderness and frequency, plus pain in my urethra, and a general feeling of malaise. Went back to the Dr. for follow up, they said all my tests came back negative for bacteria, meaning no UTI at all. They did another culture, same thing, negative for bacteria, but I was still having tenderness/frequency. They said to wait it out a week and see if it got better, and see if the blood would go away completely. I just went back yesterday, and blood is still showing in my urine (although it's not visible anymore to the naked eye).

My bladder feels constantly tender, and I have a constant feeling like I need to go. The Dr. said it could be Kidney stones, bladder stones, bladder cancer, or IC. I don't think it's Kidney stones, although my lower back area does hurt. I've made the appt. with the Urologist for Wednesday. The Dr. told me to drink cranberry juice and take asprin or advil, but I see that both cranberry juice and tylenol are on the "don't eat" list.

I don't yet have a diagnosis of IC, but just wanted to register here for support and information. I'm praying it's not bladder cancer, but at the same time, I don't want to have IC either! Something is definately going on with my body. Two years ago this happened as well (urinated blood, thought I had a UTI), but I called my Dr. and they just called me in a prescription. The prescription seemed to make the symptoms disappear, but now I'm not so sure that I ever had a UTI, and I wonder if it was a flare up.

Are there varying degrees of IC? I can still function, live my daily life, but I'm definately constantly aware of my bladder. It seems to be worse when I lay down at night, maybe because nothing else is distracting me.

I'll keep you posted on my diagnoses. Thanks for listening!

[ICLori]

Hi, Sue, and welcome! I'm sorry you've been having these bladder symptoms.

The good news is, I have heard that it can take up to a month to recover from a bladder infection - and apparently it's not unheard of to still have symptoms for awhile until your bladder is fully healed. I am hoping so much that this is what you have - residual irritation after a bad infection. Crossing my fingers that it will go away when you are fully healed.

The bad news is, it could possible be IC. Researchers have estimated that one in every 4.5 women has IC - that's awfully common! But even if it's IC, it can be managed with the medicines and treatments available. Right now, you are going through the worst of it - the time before diagnosis and treatment. Hopefully, if you do have IC, as soon as you receive treatment, you will be feeling much better. Sometimes IC'ers have to try more than one treatment before they find the one that works best for them, so don't lose hope if the first medicine doesn't work so well.

There are absolutely varying degrees of IC. It can range from having only very rare, brief episodes of mild bladder irritation, to having constant pain so bad that even heavy-duty, high doses of narcotics can't completely take it away. Most IC'ers have the more mild to moderate symptoms, that you are now experiencing, and do very well on the IC meds available, to the point where they very seldom, or never, feel any bladder irritation at all.

You've come to the right place! There are wonderful people here and lots of good information about treatments, self-help methods, etc. Hopefully you just had a bad UTI and the symptoms will go away once your bladder is fully healed, but if it is IC...we're here, and you'll get through this.

Blessings,
Lori
P.S. Bladder cancer is almost unheard of unless you have been a heavy smoker for decades, or worked in an industry that uses certain solvents/dyes that are known to be a risk for bladder cancer. Even then, bladder cancer is still pretty darn rare, really.

[DoulaSue]

Thanks for your reply :), but, I never did have a UTI, ALL tests came back negative, even the test they did the first time when I was urinating heavy blood. :( They "thought" it was a UTI and just prescribed the antibiotic before getting the test results back, then the results came back negative. During that time though, the visible blood stopped, it stopped burning when I peed, but I still have the pressure/frequency feeling, and my back hurts. I just had another urine culture yesterday, and there is still blood showing. My bladder just feels funky, full, tender, and my urethra is very sensitive.

Part of me is just hoping this goes away.... but I've given it a month and it doesn't seem to be. I can pretty much sleep through the night, and I don't have to pee every 10 minutes, but certainly every 1/2 to one hour (and in between, I "feel" like I could go again). It hurts enough that I will take one advil for the pain, but I'm not bedridden, just feel crappy.

I've spent the last hour reading the personal stories section here, I wish you all the best of luck, what a strong, great group of people!!

[Trishann]

Hi,

I can't really say much more than what Lori already gave you. But I just want to say HI and hope you can find out what is going on.

Hugs, Trishann

[L. Thomas]

:hi:

Welcome
I know you will find the support you need here.
YES there are manyyyyy different degrees of IC. Thankfully mine is the mild, controlled kind.
________
VAPOR GENIE REVIEW HIGH (http://vaporshop.com/)

[DoulaSue]

Well, today is the day of my appointment... I'm nervous! My husband is out of town so my mom is going with me for moral support. I'm hoping today isn't just a consultation, and that they can get to the bottom of what is going on. I'm still feeling constant pressure, twinges, frequency, and it's beginning to get me down. :(

[ICNDonna]

Try not to be discouraged if they don't make a diagnosis at this first visit. Diagnosing IC can take a while because it involves ruling out other problems first.

One thing you could do right now is to put yourself on an IC diet "just in case" --- it won't hurt you and it could improve how you feel. You'll find the diet in the Patient Handbook at http://www.ic-network.com/handbook --- and I would stay away from cranberry juice until you know what you have.

Sending warm healing thoughts,
Donna

[DoulaSue]

Ugh. My appt was for 4:00 today, I just got all ready to go, the phone rang, it was the Dr.'s office, and he got called into emergency surgery. They can get me in Friday, but now it's 2 days more of waiting for an answer.... :(

The good news is, I researched the Dr. and found out that he is a pioneering researcher here in our area for IC, he's written many papers about it and specializes in treating IC. It's amazing, because I randomly picked him from a list of PPO providers in my area.

[Sarojini]

Oh, I hate that, when the doctor cancels on you at the last minute!!! But, at least you will get in on Friday, and you did get to do your research. That's wonderful that he's an IC specialist; hopefully that will make getting your diagnosis easier. Let's hope he's nice and helpful! :grouphug:

[starrynite]

That is funny, that happend to me yesterday at my doc, he got called into an emergancy surgery so I had to wait two hours.