New Here

[AliciaC]

Hi-

I'm so happy to have found this site. It really seems to be a wonderful resource filled with great information and nice people! I look forward to reading more here and learning a bit. However, I thought I'd take a moment to introduce myself.

My name's Alicia and I'm almost 21 years old. I've had bladder issues since junior high and was recently diagnosed with IC (although I'm not entirely sure either I or my doctor is convinced of the diagnosis). Several years ago, I began having problems with stress incontinence while doing intensive training for gymnastics. I came to find out that it's actually not all that uncommon for young women who do competitive gymnastics, and it never really got in the way too badly, although it did make for some embarrassing moments. Anyway, I ended up growing a bit too tall to be a successful competitive gymnast, and I backed off on the training. Along with that, the stress incontinence problem got much better. I'm not sure if this is related at all to the current problem. I just mention it because I read on this site that "childhood bladder problems" are a strong risk factor for IC.

However, about two and a half years ago, I got a string of what I and my doctor assumed were recurrent UTIs. I was treated with empiric courses of antibiotics which didn't seem to help. I then had a urine culture that didn't show anything. My symptoms at the time were fairly mild lower abdominal pain and variably severe burning with urination. More troublesome, however, was the constant urge to pee. As things have gone on, the pain has really not been much of an issue. I think I have a pretty high pain threshold and I find that the pain is rarely bad enough to interfere with normal functioning. The urgency, on the other hand, ALWAYS interferes with normal functioning. When the urge comes on, I have literally seconds to get to the bathroom, and usually there's not much urine in my bladder. I frequently find that I can't hold it until I can get to a bathroom (a major problem now that I'm in college and frequently in lecture when the urge comes on), and I have taken to wearing, ahem, "disposable underwear" (God, this is embarrassing).

Anyway, with all this going on, I went back to the doctor and had another urine test. This time, she found some white cells as well as some blood in the urine, although the culture was again negative. She then sent me to a urologist. He said he thought it sounded as if I had detruser instability, but was concerned about the last urine test and mentioned the possibility of IC. He did a potassium test, which was excruciating, and a cystoscopy, which he said showed "classic" findings of IC. Now, this was just a couple of weeks ago, and I'm not sure what these classic signs are. Anyway, I'm scheduled to go back to see him on Friday and we're going to talk about treatment options. Right now, I'm on Detrol, which doesn't seem to be helping. I tried Ditropan briefly as well, but it made me feel horrible.

Anyway, that's it for now. Like I said, I'm not sure what to make of all of this yet. I get the sense that my story isn't exactly typical, but there are definitely some common features with some of the other stories I've read here.

I'd love to get to know some of you and to learn as much as I can as I go forward!

[VickiB]

:welcome: to the ICN!

While there is a lot about IC that is not necessarily typical, I could have written much of what you said.

When the urge comes on, I have literally seconds to get to the bathroom, and usually there's not much urine in my bladder.

That's how it is for me. I know the location of every bathroom, and my plans often are made based on their availability!

If you haven't already been to the handbook, it's a great place to start.

http://www.ic-network.com/patientlinks.html
Under the self-help there's a link to diet. Diet doesn't work for everybody, but I'd have to say that one change made a huge difference in my symptoms.

Let us know how your appointment goes Friday!

Vicki

[leelee88]

Hello and :welcome: To the ICN!!!

I Know in the beginning this is the most confusing time for all ICers Because IC is very hard to treat and pinpoint just what triggers are symptoms.. But once you do figure out what your triggers are then most people can go on with their lives with IC..

I do recommend starting with the IC diet, This is helped SO many people with IC with their symptoms from urgency, frequency and even pain control..

Also we have the Patient Handbook here in the ICN that has LOADS of helpful info in it.. The link is at the bottom of my page, you will also find the link to the IC diet there..If you have any questions please do not hesitate to ask..

[statesboro]

I can tell you have been welcomed by now. You have found a good place by coming on here. Besides, we will understand. Many people will not. I read that you are not convinced of the diagnoses. Ok. You are not the only one that I have read about recently that seemed to have some denial. That may not be all so uncommon. Besides, we don't enjoy having IC, or any other chronic illnesses, but it is still good to be properly diagnosed. Yep! It seems that I read about atleast onemore person being diagnosed every week.(or on here without proper diagnoses yet) Geez! Oh! You have been told about the "IC diet" by now. By the way, you would be surprised what all get discussed on here. (no need to be embarrassed)Also, I felt lost at first.(1997) Oh! I don't reckon you will be celebrating turning 21 with any beers. (not a good idea with IC)Of course, I turned 21 in Navy Boot Camp.(1987) Ok, then. Take care and be good.

[AliciaC]

Thanks to all of you for your kind messages of welcome. I've been reading about the diet and will definitely try some modifications. I was told early on by a girlfriend that I should cut out caffeine (easy for me) and chocolate (not so easy), although I can't say it's made much of a difference.

Statesboro- Yes, I suppose I may be in denial. However, I've been told (and I've read here) that urge incontinence is not a typical feature of IC and that's my biggest complaint. On the other hand, the pain that a lot of other people on this site are suffering from seems much more severe than what I've been having. For me, that part really isn't bad at all. Anyway, that's why I'm kind of questioning the diagnosis. I'll definitely be asking the urologist about all of this at the upcoming visit.

No-I probably won't be doing a lot of drinking for my 21st. I'm a serious lightweight anyway, and I know it can be a bladder irritant. Plus, I'd probably have to switch to the "ultra absorbency" Depends if I did. Not exactly the image I want for a festive party.

[Jets]

I'd like to say hi to a fellow St. Louisan. Although I haven't officially been diagnosed with IC yet, I have been diagnosed with PFD and have started Pelvic Floor Therapy. I believe it's only a matter of time before I get the bad news though. Although I don't have urge incontinece my physical therapist told me that she has had good luck treating it. Make sure you see a good Urologist. I have met some in the area that are less than helpful.

[Goldfinch]

Hi and welcome. Since your appnt with the uro to discuss treatment options is just a few days away, I suggest you read as much as you can on this website about the treatments for IC. There are many many options, including various types of drugs that approach IC in different ways, instillations and so forth. The more you know about Elmiron, Elavil, antihistamine treatment, and the various urinary tract antiseptics and antispasmodics the more you will be able to take advantage of this meeting. Write down a list of questions for the uro, since it's very easy for those things to fly out of your head when faced with so much new information.

Do you treat many IC patients?
What treatments seem to work for them?
Do you do instills? Which instills are you having good results with?
Ask about specific drugs and treatments. Tell him what seems to make sense to you and what you are comfortable with.

If you do in fact have IC, and it sounds quite possible, detrol, which is simply an antispasmodic, wont do it for you by itself, altho it might help somewhat. In addition, detrol can take weeks to become effective. But there are plenty of other antispasmodics that can be used in combo with other drugs. Coming up with a good treatment plan is half the battle with IC!

The diet is very important, so check it out. It helps a distressed bladder whether the distress is caused by IC or not, so it's worth a shot no matter what, and it really does help most of us to some degree. Patience is necessary, though, since it can take several weeks on the diet to see benefits.