They think I have IC, but haven't given me meds yet...

[sweetgirl]

About a month ago, on a plane home to Boston, it started... I had an urgent need to go to the bathroom 15 times on the plane!! It hasn't stopped and about 1 week ago, after having a very painful experience during intercourse, I decided it was time to go to the Dr. After having an ultrasound done and tests, my Dr. is assuming I have IC. My fiance has been wonderful and has printed out everything on the disease (much of which is disheartening b/c so much seems unsolved about it) so I am beginning to learn about it on my own...

I am supposed to go to a bladder specialist in a few weeks, but in the meantime I'm trying ANYTHING to stop the feeling of having to urinate and the pain... yesterday, I took 25 different pills to stop it from Aleve to Ibprofen to Cranberry Pills(for bladder) to Antihistimines...

I wish I could stop the need to urinate... that's the thing bothering me so much now... anyone have a suggestions? The antihistimine seemed to work, but I'm nervous to start taking them often and then have them wear off... I'm also so tired (from getting up 3 times a night and having to take a sleeping pill to try to get through the night)...

I'm just so confused as to why I have this, how it started, and how to get through... and, to be honest, if I even have it?

Please help...

[ICNJess]

Oh my gosh, STAY AWAY FROM ANYTHING CRANBERRY!!!!! If you do have IC, this is going to make things worse. The only thing I can think to suggest is the IC Diet...which is basically nothing acidic, nothing with caffeine. Eat very blandly. That might help you. Let us know how the appt goes!

Hugs,
Jess

[emilyrose197377]

:welcome: to the ICN . You will find alot of info about ic and support from other members as well.

Kim

[patricia1]

Jess is right cranberry is not good for an IC bladder. Also the Ibprofen is probly not a good idea either. You said you tried the antihistmine. I was going to suggest the benadryl for that. Also try elimating things from your diet that bother the IC. Things like coffee, sodas, tomatoes and tomato based products, chocalate. There is a list of things in the patient handbook on this site www.ic-network.com/handbook. It has alot of info on it. Hopefully you will find out more at your appt. Did they check you for a bladder infection (UTI) when you went to the dr?

[sweetgirl]

They did check me for a UTI, but considering it's been a month, and it didn't show up in my urinanalysis, and they did the ultrasound, and after testing me for other stuff, they are thinking it's either IC or endometriosos (although my Dr. is saying she thinks IC)...

Well, yeah, I guess the Cranberry pills were bad, I just thought b/c they help with UTI's, it's best, but now I know...

So, no caffeine :( Ok... there goes my coffee in the morning :(

And, I'm not really sure what acidic food are?

Thanks so much for helpin... this is making me feel so strange and I'm so uncomfortable and my fiance is so nervous... it makes me feel better to get some advice...

[ICNJess]

http://www.ic-network.com/handbook/diet.html

Check this out, it will tell you what exactly to stay away from, food wise.

Cranberry is an honest mistake--docs used to tell me to drink it when they thought I had a UTI...I'd end up in so much pain, and no one would believe me! So just hang in there :)

[Ginny]

Are you taking any vitamins? If so, I would stop for now. I hate giving out this advise but the Vit C and some others could give you more frequency.

Awhile back there was a male asking for advise for his girlfriend. Was that your fiance?

Ginny

[ICNDonna]

I agree that it's a good idea to try the IC diet to see if it helps. You also should drink plenty of plain old water. You might try taking some Tums --- they sometimes help. And benadryl can help with sleep. Most of the over-the-counter sleep aids are the active ingredient in benadryl.

Let us know what the urologist says.

Donna

[SharonA]

:welcome: to the ICN...

I just want to agree with the others...check out the information available on this site. Almost everything I know about IC, I learned from reading the articles and the posts from other IC patients. Please do try the IC Diet. It can sound very limiting in the beginning, but it is very important to find out what foods and drinks cause your symptoms.

Stay with us and let us know how you are doing. :) :) :)

[Annie2]

I would just like to add another :welcome: to the ICN. You have been given good advice by the others. Definitely stay away from anything cranberry! Cranberry is thought to be helpful in preventing UTIs in those with healthy bladders because it helps prevent bacteria from sticking to the bladder lining. For those of us with damaged bladder linings, however, it can cause HUGE problems!

Jess gave you the link to the IC diet information. It's definitely hard to give up so many favorite foods and beverages but, for many of us, following it really helps to reduce pain and frequency. Even if it turns out you don't have IC, trying the diet won't hurt you and may help reduce the symptoms you are experiencing. Ibuprofen is a big bladder irritant for many ICers so you might want to avoid that, too.

You are very wise to begin reading and learning as much as you can about IC. The Patient Handbook on this site includes a great deal of valuable information. I strongly suggest you start reading through it. Do pace yourself and don't try to learn it all at once, however. Doing that can be absolutely overwhelming! Read a bit and then give yourself time to digest what you have learned before moving on to more information.

Please do keep in mind that the majority of IC patients do find meds and/or treatments that work for them and go on to live fairly normal and happy lives. Because we are all a little different, it sometimes takes a periiod of trial and error before we find just the right treatment for us. Most of us do get there, however.

We are all here to help one another. Though we aren't physicians, we are glad to share our IC experiences and will do our best to answer the many questions you may have. This is a very supportive and caring group of people. Glad you found us!

:grouphug:

[traceann]

I just wanted to add my :welcome: to mix also!!! Glad you found us, there is sooo much info on this site and from the wonderful people, I am sure you will find something to help you through. (the support alone is wonderful!)

For me the diet was one of the greatest things I could do for myself and easiest. (not easy in terms of having to give up favorite foods for awhile, but easy meaning I could do it for myself, no doctor required) It took a few weeks of watching what I ate to finally get to the point where I could tell what or which foods were aggrivating me. I figured my poor bladder had been assaulted for so long, it was bound to take some kindly-treatment time to help it calm down. ;) But, I was pretty impatient, lol. I remember one of my posts was "how can you tell what hurts you when you hurt all the time?!" LOL I did was what recommended to me, I ate solely from the "usually ok" list (the diet link you were given) for about 3-4 weeks. Then slowly one at a time I started adding in things from the "may be ok" list. I would add one in, wait about 3 days --if no increase in symptoms, it was a keeper. If I had troubles from it, it went on my personal no-no list, to be retried at a later date. If once again it failed the test, it was on the permanent no-no list. I now have discovered I can eat a lot more things than I thought I would be able to, so it hasn't been all that bad. I just stayed away from all sorts of troublesome foods in the beginning months. Figured it was just safer that way, and I liked feeling decent. My no-no list is relatively small, which I am happy about. Plus I feel the meds are finally starting to do their thing, so that's helpful.

I hear ya on the coffee issue, lol. That was the first thing I cut out, along with my Cokes, ugh. But, I did find an acceptable replacement for my coffee, I have really grown to love "Postum" (the caffeine free version), with my coffee creamer and sugar. Funny, I took sip of my hubby's Coke the other day, and I did not like the taste of it anymore! Crazy!! :loco: But there are also, low-acid coffees out there too, I haven't tried any yet, but I have had good luck with a cup or two of Starbuck's Breakfast Blend. I also use the Prelief tabs for anything that I know has some acid in it or on foods I am not really sure about. Those things are wonderful, I have them with me at all times. But right now, I would stick with substitutes, vs the real things until you get going on finding out what the trouble is. I drink lots and lots of water, that seems to be my main and beverage of choice now a days. :biglaugh: Also if I discovered something that had bothered my bladder a bit too late, I drink a big glass of water with a tsp of baking soda stirred in. Tastes yucky, but sure can calm the bladder down sometimes! (just be careful if you have sodium-related health issues)

Have you tried any of the Pyridium (Rx)-type drugs? There are over the counter versions that are always in my medicine cabinet and in my purse, lol. I either buy Uristat tabs or AZO Standard tabs. They help with the urgency/frequency issue. They are an analgesic for your bladder, they numb things up. But, the downside is you do pee orange and can stain undies, I swear in the beginning I was just going to buy all orange undies!! But pantyliners do come in handy for that. It's not a long-term solution, as it's only directed to be taken for like two days, as I gather it's hard on the kidneys. But I did discuss with my doc how often and frequently I could use it, so we came up with an amount that helped keep me comfortable when I really needed it, like for sleep. And yes, I did the Benadryl thing too, before I was prescribed the Vistaril. It seemed to help me out quite a bit, for sleeping especially.

My heating pad has become my best friend also for night-time mostly. It has a magical effect on my bladder when it hurts or has the "gotta-go-every-5-minute" feeling, lol. I invested in on with an auto-shut off, so I could fall asleep and not worry about it, lol.

Hope this helps a little bit, and hope you find answers soon!! Hope to see you around the boards too!!

Hugs,
Tracey :)

[sweetgirl]

Thank you Tracey!! That really helps... to all of you... THANK YOU!! This must have been so strange for all of you too when it first started and how lucky I am that my fiance found this group and told me to talk to you all...

I think, right now, besides the frequency and pain, the worst thing is not yet knowing if this is reallllly what I have... I just can't wait to see the Bladder Dr. and make sure :)

I hate the idea of cutting out my Starbucks coffe :( But, I guess that'll go first... tonight, I'm going to get Prolief and Benadryl and maybe (just maybe) I'll sleep through the night?

[July]

Watch out for additives and perservatives and dyes in over-the-counter products.

[traceann]

Oh yes, I don't know what I would have done had I not found this place. All my self-help remedies, have come from these boards. My area is pretty rural, and I might be one of two, lol, patients my gyno treats for IC. Ugh. He handed me this little list of foods to avoid and told me to take Prelief and try the baking soda and water. That was it. Gee, thanks alot. I got through my first huge flare (the one that got me my diagnosis) with nothing but OTC Tylenol, lol -- oh yeah and Thermacare Heat Patches. Looking back now, I can't believe how unprepared I was back then, ugh. If it wasn't for these boards I shudder to think where I'd be at right now!! :)

Yep, the Benadryl helped me sleep, seems it's kinda hard to get drowsy and sleep when bladder says "um, lady --- we need to pee NOW!". ;) I used to take the Uristat or AZO Standard at night too, and that helped me sooooooo much get some must needed rest, since it numbed everything up, the urgency and frequency wasn't an issue...ahhhhh. ;) But, like I said, I used it for as long as the box said I could, then called my doc and asked if I could take it a bit longer. I found that taking it at night for me worked out ok, during the day I seem to have a better tolerance for the "urgency" feelings, than when trying to sleep. And I found that I did much better in dealing with it all when I'd had a good night's sleep -- made all the difference in the world!

Hope you start feeling better soon, and get some sleep!! :)

Hugs,
Tracey :)