Confused

[daniele]

I have not been officially diagnosed, but believe this is what is wrong with me. I have gone to several doctors and two specialists. Ironically neither of specialists ever mentioned IC. About 7 years ago I was having lots of trouble with UI's. My doctor would do urinalysis and it kept coming back that there was no infection. It was as if I had a UI infection for about 6 months straight. I then went to a specialist who did a scope and put me on Macrobid. I was to take Macrobid after having sex or any time I felt that I was getting a UI. Until about 2 1/2 years ago this worked. Then one day the medication just stopped helping. Since then I have seen another specialist who gave me an ultrasound, x-ray, some test where I had a cathedar inserted and it monitored my bladder. I did not get any answers. During this time I determined that I believe caffeine is a trigger for me. I can drink it in moderation, but if I have too much I began to feel as if I have a full blown UI. My self analysis so far is that I HAVE to drink lots of water daily. My bladder seems to bother me more when it is empty. I do have some bleeding at times. I feel lots of pain in my pelvic area and feel as if my bladder is swollen. I have terrible burning my urination and of course the frequency. What I don't understand is why this goes away and then comes back. I think it has been about 4 months since my last bladder problem. Just when I think it is gone, it comes back. I can feel the symptoms coming on and within hours can be in terrible pain. I get so frustrated. I also feel that I have to have sex in moderation or it will contribute to bladder symptoms. At this time I still have not been diagnosed, but I feel as if no doctor has any information about IC. While I would like to know for sure what is wrong with me, I hate the thought of going to another doctor just to be told nothing is wrong with me or basically that they have no answers. Not sure what the cause is, what the treatment or cure is, etc. Please share your thoughts with me. I would love to hear others opinions and suggestions, etc.

[jaime15]

Daniele,
I'm thankful you found this site...look around at www.ic-network.com/handbook
Your story is very similar to mine. My first uro suggested the macrobid after sex as well or as needed. Well that wasn't good enough for me...cause that didn't even work for me. So I searched around for a uro that finally dx'ed me with IC. After I started elmiron I felt like a new person again... :)
You are very smart to stay away from caffeine and drink more water instead...
I hope you get the dx you deserve....big hugs to you........I look forward to seeing you around.

[daniele]

Jamie,
Thanks for the reply. You are the first person I have heard of that was prescribed Macrobid also. I am looking forward to communicating with people who know what I am going through. I think this will be extremely helpful. I sure hope so.

You know the more I read it seems that one of the common symptoms is the frequency. I only have this problem when I feel that my bladder is aggrivated when I feel as if I have a bladder infection. Otherwise, the frequency is not bad. Is your situation similar to this or different? This is the one symptom that throws me a little.

[jaime15]

Well the frequency isn't my main symptom...I also have pain and urgency also. But not all the time or at the same time every time. Sounds like a roller coaster huh? I think everyone has a problem w/frequency....I mean it's common to have it and be a normal person w/o IC....
:rolleyes:
I know how frustrating it is for a uro to give you a med and say take as needed and send you on your way......keep searching til you find the answers you need....every person deserves to feel normal even when our bladders aren't..
Hugs to you.... :)

[VickiB]

Hi Daniele,

Your story sounds almost exactly like mine, except I went twenty-some years before diagnosis. My symptoms were so common to IC, yet none of the doctors I saw in all that time ever put 2 and 2 together! But I never figured out the relationship between food and pain like you have. Yes, coffee can be a trouble maker! So can many other foods, so if you haven't already, you might want to look at the IC diet in the handbook on this site. I'd go from feeling fine to being unable to function in no time at all. I've since learned that for me, those flares were almost entirely food related, and by avoiding certain foods I rarely have those episodes anymore. When I do indulge in something I shouldn't have and that awful burning starts, I find baking soda in water puts out the fire fairly quick. (1/2 teaspoon to a glass of water) Sometimes it takes me 2 to 3 glasses though, and if you're on a sodium restricted diet this would probably not be for you.

There's also a place (I believe) on this site where they list doctors familiar with IC. Perhaps one of them is practicing in your area, and would be worth a visit.

Best of luck in your search for the answer!

Vicki

[ICNDonna]

It does sound like you might have IC. My suggestion would be to go back to your urologist, or find another one, and specifically ask about IC. You'll find information about symptoms and diagnosis in the Patient Handbook, which might help you in dealing with your doctor.

Warm hugs,
Donna

[work it]

My suggestion was to also see an urologist. I don't recall reading that you saw one but I may have over read it. IC is very frusting espicially when you are not getting the answers you want and need. Stay away from foods that have acid and also if you do eat foods with acid even a little bit of acid take some prelief. Good luck and welcome to the IC boards.

[daniele]

Thanks everyone for your thoughts. I will try the baking soda trick. That would be great if it helps. I tried looking for a doctor as suggested on the site, but no luck. There is no one in my area. I wonder what good it will really do to be diagnosed at this point. I guess I would like to just to take away the "what ifs". The thought of the scope sounds absolutely horrifying, I don't know if I could do it. It seems that even when you are diagnosed there are really no answers. I think I have read about flares, I take that to be when IC is really aggrivated. When I have the strongest symptoms and feel really bad I guess this would be called a flare? To me it has always just felt like I was getting a UI. Is there medication that helps when having a flare? I believe I started having one on Sunday. My doctor prescribed pyredium(sp?), this helps the pain for me, but it is getting more difficult for me to get this prescribed because apparently it can cause liver damage my doctor said. Is it possible that if you have IC you can sometimes still have a UI?

[jaime15]

You can always have a uti inspite of IC. Until you have had IC for a while it takes time to decide when it's a uti or just a IC flare up. When ever in doubt, you can get your urine checked at the office or some patients use the at home tests to make sure it's a uti before paying their co-pay at the office.....hugs..

[Sarojini]

:welcome: to the ICN! Just wanted to say :hi: and welcome you to the boards.

It does sound like you may have IC... please, keep looking for doctors that are up to date and sympathetic. Keep doing all the research you can so YOU are up-to-date on the condition, because it's possible you may even need to print out some info on IC and bring it to your doc... say something like, "I came across this and these symptoms sound an awful lot like what I've been experiencing. Do you think this is a possibility with my case?" Sometimes, if a urologist isn't used to dealing with IC patients, the diagnosis may slip his mind and this may prompt him to do some further testing.

However, one warning: if he reacts to your concerns with irritation, anger, or dismissal, it's time to find another doctor who is more sympathetic. This type of reaction is a big indicator that the doctor does not look at the doctor-patient relationship as a "partnership" and that he will not be sympathetic to your concerns in the future. And, if there's one thing most IC patients have learned, it's that you ABSOLUTELY NEED a caring, sympathetic uro who's willing to listen to your concerns and allow you participation in your own care.

Good luck and I hope you feel better soon :) :grouphug:

[Sandra11]

Hey Daniel,
I have not been officially diagnosed either. I mean my gyn thinks its possible and I should explore the Idea and my 1st urologist thought it was IC, but i wanted to get a 2nd opinion so im seeing another uro but he was questionable but again i only saw him 1x...he is treating me for a UTI with levaquin which just doesnt seem to go away and i am very irritated and its driving me nuts....one thing that all 3 dctors mentioned to me the idea of taking antibiotics after sex...initially they thought macrobid but i somehow became allergic to it and cannot use it anymore...i dont like the idea of taking medicine everytime i have sex....right now i cant even have sex b/c the burning pain is so unbearable...i feel like im kinda on the same boat is u b/c dct after dct and im still not sure what is up with me and why i keep getting these infections or why tehre not going away and my urine tests showed i have uti but my vaginal cultures showed nothing and the gyn said it must be yeast b/c thats bound to happen with allt hese antibiotics and she suggested monistat. I don tknow ...but i hope we both get answers soon

[daniele]

Sandra,
Thanks for the message. I hope you get answers soon. Your story does sound very familiar. Last week I had a UTI or flare up. I don't know which. Starting to feel somewhat better, but scared to drink soda or anything that might bring it back on. Even scared to have sex, because I'm afraid it might cause it to come back. since I have been feeling better this week, I haven't been on this website as much. IC kind of messes with my mind. As many times as I go through this entire process, I always believe that once I start feeling better maybe I am BETTER / CURED. However, whether it is a couple weeks or months, it always seems to come back to haunt me. Please keep in touch with me about your situation and diagnosis. It would be nice to have someone to compare symptoms, etc. with. Take care.