New to IC

[Cailen]

Hey everyone! I have been browsing this forum for a while, and you all seem very friendly, and very supportive of each other!

A little about myself, I'm 22 years old.. live in Michigan, finishing college in May (thank goodness) and have just been diagnosed with IC this past month. Since last August I had thought I was having continuous bladder infections. Then I had 3 different cultures done with no bacterial problems so they ruled the UTI's out.. had some ultrasounds to check my kidney's and bladder.. showed nothing, had a cystoscopy.. had a wonderful looking bladder, and this past week has the potassium sensitivity test done, but my pain level only went from a "1" to a "3" on the pain scale.. I was thinking when the potassium went in, if I had IC.. I'd feel like I wanted to jump outta my skin, like a had read that most of you felt like! My OB/GYN put me on VESIcare, (5mg/day) and I've already been on the IC diet for most things.. I also have Pyridium to get rid of any other pain down there..

I guess I was just wondering, my OB/GYN said I only have a mild case of IC.. but that's really not as definite of an answer as I wanted.. like the rest of you, I wanna know what's going on with my body! I'm not in pain all the time, and I only find myself using the restroom maybe 4-5 times a day and never wake up in the middle of the night to go to the bathroom.. I'm wondering how possible is it that there is something else going on, or do I really have IC?? Any info and comments would be verrrry appreciated :)

Thanks, and in advance, it's nice to meet all of you! :hi:

Cailen

[statesboro]

I reckon I am going to be the first one to chime in. It's probably because most are sleeping by now. I hope to be shortly.(6:00pm-2:00am shift) Oh! I do know some had thought they were having bladder infections only to learn there was no bacteria as well. I happen to have a UTI on top of the dreaded IC right now. I do think some individuals had an ok looking bladder until the hydrodistention was done. I never had the potassium sensitivity test, but a "3" does not ring in my head as being what some have had. (like major pain) Ok. I don't know if you really do have IC, but it seems like you must be questioning the diagonoses. By the way, none that I now about pee only 5 times in a day. If I am not mistaken, the rule is that peeing more than 8 times in a day is not considered normal. Ok. You wanna know what is going on with your body, but I know no more than what I read about you. You were right. We are friendly and supportive of each other.(because we understand and care) Of course, many people don't understand. Most of us look healthy, but we know we have to deal with a chronic illness, or illnesses, every day. Ok, then. Others will chime in. I am tired like a big dog now. Take care and be good.

[ICNDonna]

I think it would be a very good idea to see a urologist.

Donna

[anna14]

Hi Cailen. I just wanted to respond since my situation seems pretty similar. I'm 28 and got what I thought was a UTI in August. However, numerous cultures have all been negative, so after ruling everything else out, I'm sort of unofficially been diagnosed with IC. (I've refused to have the cystoscopy with hydro right now.) However, my only symptom this whole time has been burning with and mainly after urination. I'm not sure what your symptoms are, but I too urinate no more than 6 or 7 times a day and have no "bladder" problems, no urgency, etc. I am pretty much resigned to thinking that I do have a mild case of IC but there is a little bit of me that is just convinced that it is something else. I say this just to say that I understand your uncertainty. I have a great nurse practictioner who has done a million tests and has ruled everything else out, leaving IC really as the only option.

Feel free to send me a message if you'd like to compare situations. Good luck!!

[kaestu]

I also believe I have mild IC and question the recent diagnosis. I had a cystoscopy & the potassium sensitivity test with my urologist a little over a month ago. My cysto showed that my bladder looks great, but the pain from the potassium test burned burned burned, which is where my diagnosis comes from.

I do not experience a lot of the symptoms that others on here experience. I have random irritation, mostly in my urethral area, off and on from day to day and it doesn't really seem to be connected to anything (such as foods, etc.) However, if I do develop a UTI, the symptoms flare up and I experience more of the pain, urgency, frequency, etc. that others experience (long after the UTI clears up.)

I am sticking with the diagnosis because I don't know what else it could be. I have done tons of research on IC, my symptoms, and similar conditions, but nothings "fits" me as well as the symptoms of IC.

I have curbed my diet and am taking CystaQ but I haven't noticed any changes in my symptoms yet. Some days, like today, I have no symptoms at all, and other days I feel worse.

I wish you luck and know that you are not the only one out there who wonders whether or not you actually have IC.

[Nonna]

Hi Cailen. I hope this won't be too long-winded but sometimes it's helpful to hear how different IC is for different people. One of the most frustrating things about IC for me (and I think there are others like me)is that it is a really enigmatic and variable condition. I'm much older than you but when I was in my 20's I don't think they knew much about diagnosing IC...and now I remember back that I always had a kind of "funky" bladder (felt like UTI's a lot but cultures would often come back negative), then it really got bad when I went through an early menopause and lost all my estrogen (so I thought it was all due to lack of estrogen because my bladder then felt much better when I started on estrogen)...but this kind of waxing and waning went off and on for years. During one of the flares about 10 years ago I had a hydrodistention/cystoscopy and the urologist didn't see any damage to the bladder lining and I had a normal capacity...her diagnosis was "urethral syndrome/possible IC." So, for years I convinced myself that I didn't really have IC because of the findings of the hydro/cystoscopy...even though I was very often feeling like I had UTI's. In the last couple of years I've had a pretty continuous flare and my current doctors (who are extremely knowledgable about IC) say that oftentimes the findings of the hydro or cysto don't exactly correlate with the degree of pain or frequency...a lot of thinking now is that it can be irregularities with the nerves and that's not something that they can see, and they tell me that IC is often diagnosed just based on symptoms. Then, during a recent pelvic surgery last October (hysterectomy and repairs) my urogynecologist did a cystocopy while I was under anesthesia and reported that there was notable IC in my bladder. So now the lab findings actually correlate with my discomfort and I've accepted the "official" diagnosis...even though nothing has changed with how I treat it or how my doctors treat me.
As far as your questions, maybe you just have a little bit of a vulnerable bladder that acts up for a whole variety of reasons...or maybe it's a very mild case of IC/irritable bladder at the very low end of the continuum. If your symptoms are mild and it doesn't affect your life too much, maybe you don't need to be concerned that you don't have a true "diagnosis." But if it's interfering with your life, it's important to find a super-informed urologist (make sure he/she REALLY understands IC--I went to so many of them that were awful) and there are lots of things they can suggest to help the symptoms, as well as great info on this site. I hope that you continue to do O.K. Best wishes, Nancy

[leelee88]

Great Advice Nancy!!! I totally agree!!

[Cailen]

Thank you all for the wonderful advice!! I really appreciate it! I will definitely keep up with my condition to know for sure if I have IC!