Can you tell me if this sounds like IC?

[KEM07]

Hello everyone. I discovered this forum as I was researching endlessly online, trying to find an explanation for the symptoms I have been feeling since mid December. I’m hoping that someone will be able to relate to me and help me narrow in on a possible cause, which based on my research, could be IC.
To provide a little background, I am a 23 yr old female. I have had recurrent confirmed UTIs for the last 5 years, anywhere from 3-5 per year. I was able to hone in on certain triggers-coffee, alcohol, and sexual activities. I controlled these and added an almost daily organic cranberry juice regiment into my diet. I was able to nail down an imminent infection right away, ensuring it wouldn’t spread too far into my urinary tract-the same textbook symptoms of urgency and burning every time. If I got an infection I tried to self treat using colloidal silver, a natural antimicrobial, or went to the doctor for a course of antibiotics. They always responded to treatment and my symptoms cleared up right away. Then came something unexpected…
Leading up to this current episode, I was drinking a lot more coffee than normal, thanks to a new espresso maker (yum!) and had a massage (which has caused me to get a UTI before). My symptoms were like a UTI, but they weren’t my usual ones, and it didn’t feel right. We know our bodies and my gut told me something was different. My symptoms began with heavy bladder pressure and spasm feelings, frequency, but no burning. After voiding, I would feel like I had to go again right away, and a nagging feeling lingered in my urethra. I began my standard extra cranberry juice and colloidal silver treatment but nothing worked. So, I made a trip to the doctor and to my surprise my test was negative (which is the first time for me, I always test positive with any urinary symptoms). He gave me a course of antibiotics in case, but they didn’t help. My symptoms were becoming less prominent and easier to tolerate but I just didn’t feel “normal”.
After testing negative three more times, I was referred to an urologist. He did a kidney ultrasound and CT scan which have come back clean other than two kidney cysts which he says are fine. He mentioned IC to me but I feel like my symptoms aren’t “serious enough”, based on everything I have read on this forum. Over the past few weeks many of the symptoms have disappeared completely. I have cut out coffee completely and only drink cranberry juice now and again since its acidity may be adding to the problem. But, I’m still left with this nagging feeling in my urethra, accompanied by what is sort of a tight muscle feeling. It seems to be worse when I don’t have a full bladder so I’ve been trying to drink more water than normal. It also seems to be aggravated by alcohol and artificial sweeteners. My urologist says a cystoscopy is the next test in line but I honestly am a little scared to go through invasive testing. My aunt was diagnosed with a narrow urethra and had hers stretched a couple years ago so I’m wondering if this is a more likely cause. I do wonder if my UTI history has caused some damage?
Overall, I feel blessed to have such moderate symptoms, but the thought of living with a chronic disease is frightening. Part of me thinks I may be delaying testing to avoid a confirmed diagnosis. Any help or insight anyone can give is appreciated. And I do apologize for my lengthy post, I’m just not sure what’s irrelevant anymore after such a mind boggling episode. Thanks for such a supportive and informative forum! :)

[vm]

Your symptoms sound similar to what mine were - I felt like I had a UTI and was shocked to find that I didn't! You can click on my story - it's below my "signature" in the post. Maybe you could relate to some of it?

[hensleyi]

That sounds very similar to my story. I had a terrible UTI in summer of 2005. I took several antibiotics for it and remember thinking that the pain was not going away as it had with past UTIs. This was probably the 5th or 6th UTI that I had ever had. I remember going back to the doctor thinking the antibiotics had not gotten it all and that was why I was still having pain. I was shocked when he said that my urine was negative for bacteria. That was sort the beginning of IC for me. From there is seemed to progress rapidly over the next year before I figured out what IC was and sought treatment. I used to drink a lot of coffee and acidic things that I could tell were making it a lot worse. I know alcohol and artificial sweetners bothered me tremendously. I have had to cut out most beverages other than water and marshmallow tea and I avoid citrus and tomatoes and a ton of other things that I have found to irritate. The triggers seem to be different for everyone. I also have a lot of burning and irriation in the urethra which I don't quite understand, but your story did remind me of my own. Good luck to you with your procedure coming up.

This is a great site and has helped and comforted me a great deal!

[Goldfinch]

My symptoms were very simple: everything felt like a UTI (altho I was never prone to them and only had a few over the last 60 years) and all bacterial tests but one were negative. The symptoms came and went for a year. Drinking lots of water helped a lot. Finally nothing really helped.

It is true that cranberry has antiseptic properties and can be helpful for a simply UTI, IF and only IF there are no other conditions present. However, if you have an irritated bladder and are negative for bacteria, cranberry juice or any other known bladder irritants would be counter-productive. Even the first uro I saw, who did not believe I had IC and treated me for a UTI (I did have one) suggested that a low-acid diet would be helpful in giving my bladder a chance to calm down and letting the antibiotic do its work.

I suggest reading up on the IC diet here (and everything else in the handbook) and seriously considering cutting out all known bladder irritants; at least cut out all sodas, coffee, black tea, chocolate, alcohol, citrus and other acidic fruits, and tomatoes. How you respond to diet is also a useful diagnostic tool. It may take a few weeks, but if it helps that can give your doctor some good information.

I assume your uro is suggesting an in-office cystoscopy. It is done with a numbing gel, and a catheter is used so the doctor can look for sign of bladder cancer (very rare) or stones or visible signs or irritation. Your bladder will be filled somewhat with water, but then you will pee it out quickly. It is usually not painful, just uncomfortable, and it's useful, but it is not ordinarily a diagnostic tool for IC. IC is a diagnosis by exclusion, and that's often the first step.

[VickiB]

My IC journey started out much the same, recurrent confirmed UTIs for about 5 years, anywhere from 3-5 per year. Then it changed,..all the horrid symptoms but urinalysis would come back clear of infection time after time.

Before diagnosis I came across this site and thought my symptoms certainly 'fit', but these folks are way worse off than I so this can't be what I have! I now know that IC comes in many varieties. FWIW, even though I went undiagnosed & untreated for a long time, the level of my symptoms remained the same. I've never progressed to the severe point that some of our members live with. If it is IC you're dealing with, there's no reason to expect you'll go there either!

I hope you find answers & relief soon.

Vicki

[graceunderfire]

Kem07, I totally understand and can relate to your experience. The not knowing is so frustrating. It's also hard trying to figure out exactly what it is that is a "trigger". I remember telling a friend that it seemed as if anything or everything was a trigger to the symptoms--so in other words, I couldn't tell if they were real triggers or just the way it is anyway!

You mentioned that massages have triggered UTIs. I have actually made that connection too. But as I stated earlier, I wasn't sure if that was a real trigger or not, or it just happened to be coincidence. In fact, I was going to ask about it in my first post a few days ago, but I wasn't sure if there was a real correlation or not (couldn't find anything about it when I did a "search").

So are there others who are triggered by massage? If so, why is this?

Grace

[kaestu]

Your symptoms and experience are very similar to mine. I was recently diagnosed with IC but have been wondering ever since if that was the right diagnosis. Right now, my only triggers are not drinking enough water, certain alcohols, and sexual activity.

I have struggled with bladder infections my whole life and have also had my urethra stretched 3 times...about once every 10 years. I got my IC diagnosis through a cystoscopy which actually showed that my bladder looks pretty healthy. However, when my doc injected potassium into my bladder, I felt very painful burning immediately and she was surprised that I did since my bladder looked pretty good.

I am still trying to figure this whole thing out as well but am learning that IC takes on many forms and comes in many levels. It seems to be a very "personal" condition that affects those who have it very differently from person to person.

I feel like I am one of the "lucky" ones since my symptoms are mild and I do not have a lot of triggers. I know it could get worse, but it may not.

[KEM07]

Thanks everyone. I'll probably call my uro back this week and see about scheduling the cystoscopy. I guess if its IC, or something else, doing these tests is the only way I'll start to get any answers. Hopefully I'll be back with good news soon!