Newly diagnosed with ic? I need help

[RobinL21]

Hey everyone my name is Robin. I found this website looking for answers and hopefully someone can help. About 2 years ago, i had my first UTI and ever since then I was CONSTANTLY getting UTI's( usually occuring after intercourse). My first urologist performed a procedure ( cant remember the name) where they look at ur bladder than fill it up with h20. He told me that my bladder was inflammed, he also did that procedure where they put the catadere in you and blow it up and concluded i have overactive bladder. He put me on bactrium( along with an OAB med, that didnt work) and about a month later i had an allergic reaction to it, and i never got a call back from the office ( along with a few other things that angered me) so i decided to go to another doc. On my first visit she said i think i know what you have, IC. So from there she put me on pyridum than 2 weeks later ( yesturday) i went back for another appointment for her to put me on ELMRON ( which im scared to take after reading some horror stories) My question (FINALLY) is, how does she know i have IC when she didnt do any test while the other doctor actually looked insided of me and said you have an inflammed bladder. MY current urologist thinks that all my UTI's were actually not really Uti's ( we dont know becuase unfortunilty my urine was never cultured) although she has cultured my urine, but while i had no symptoms,so obviously the results were negative. Recently since everything has been going on, i have had pressure in my pelvic area ( i dont know if it is just my mind though?) When i do have the pressure( which seems to be most of the time,but usually not too intense) i almost always use to bathroom, but the pain is still there. Also does anyone ever get this pain in there bladder/pelvic area where it feels like a big gas bubble or somthing sitting or ur bladder making you feel, the whole day, that you have to pee and can be painful? One more thing, i do have to visit the restroom a lot, but not as much as some of you because I dont drink liquids really becuase if i do i have to go the bathroom almost immediatly and continously every 10-15 mins and its VERY embarassing. I know this is long but im just so confused and I feel like since im young doctors overide my opinions and dont really listen or explain things well to me. If someone could help id really appreciate it! thanks!

[armslee]

Hi Robin-
Have you checked out the patient handbook yet? I learned soooo much there after I got diagnosed. I also went to my local library and did research there and on the internet.
Pressure is very common as is urinary frequency. However, you need to drink plenty of fluids. I know that you will have to void more, but keeping your urine diluted will help with bladder and urethral pain. The more concentrated your urine is, the more it will hurt and burn coming out!

Has your doctor started you on any medication yet?

One of the things you can do is start altering your diet to more low acid foods. That is in the handbook here too. It really will make a difference.
Heating pads, pain medication and rest will help your pain and fatigue as well.

God bless and I hope you find some relief soon!

[RobinL21]

hey thanks for your input! Yea, my doctor wants me to start elmiron, i guess ill take my first dose tonight, im just concerned thant I really don't have ic? And i dont want to take elmiron and have all those side effects ( i have problems with my stomach to begin with) plus im allergic to tons of meds and i pray im not going to have a reaction to this. Yea i guess i should drink water to dilute it. Oh the thing with the diet, i was given the paper of food to aviod, and most of those foods arent in my diet anyway, so im just confused :(

[traceann]

Hi Robin and welcome to the ICN!!! Does your new doctor have your records from your old doctor, on the test results etc? My gyno diagnosed me on symptoms alone - as she may be doing, plus possibly your test results from your other doctor. An inflamed bladder is a hallmark of IC, so that alone may be her basis for diagnosis.

And don't be afraid of the Elmiron, I know there are horror stories, but those things are very unlikely to happen, lol. Odds are low. ;) Like for the hairloss - about 2% of patients taking it have hairloss, which by the way is reversable once stopping the medication and sometimes a two week break or so from and then back on is enough to straighten it out. Some people have heartburn from it (I did), and if that happens, try taking it out of the capsule and mixing it into a couple ounces of water. Something in the ingredients of the capsule seem to cause the problem. Once I started opening my capsule and dumping the powder directly into the water, my heartburn went away!! ;)

Once again welcome - and as Wendi said DO check out the handbook and the IC Diet if you haven't already. The diet was a huge tool for me in controlling my symptoms! I look forward to seeing you around the boards!!!!

[traceann]

Ooops, P.S. on the diet issue, if you already avoid a lot of the foods, and still have troubles, watch out for preservatives and additives, MSG etc. They can wreak havoc on some bladders!!! ;)

[Katrina]

:welcome: to the ICN!!!
If the diet bothers you than it is very likely you have IC. Like Tracey said...Elmiron is normally well tollerated. Most of the side effects are in the capsule not the drug so if it bothers you try taking it out of the capsule and drinking it.
i have had pressure in my pelvic area ( i dont know if it is just my mind though?) When i do have the pressure( which seems to be most of the time,but usually not too intense) i almost always use to bathroom, but the pain is still there. Also does anyone ever get this pain in there bladder/pelvic area where it feels like a big gas bubble or somthing sitting or ur bladder making you feel, the whole day, that you have to pee and can be painful? I doubt the pressure is just in your mind. i have that symptom too. Part of this problem is Pelfic floor dysfunction (PFD) in me. you describe it like a big gas bubble....do you have (IBS)?
When my IBS flares it often puts extra pressure on my bladder...and it is a struggle to make it all go away.
PFD newsletter posted http://www.ic-network.com/forum/showpost.php?p=256636&postcount=11
I suggest reading up on PFD because the pressure is sometimes because of PFD, it can increase your risk of UTI's, problems after sex can often be because of it.
http://www.ic-network.com/forum/showthread.php?t=20369&highlight=newsletter

Hey girl my stomach hates me too...but I get along ok with Elmiron. Do you have an ulcer? I know that even though my bladder is doing better sometimes other parts of me don't like the extremes in the IC diet because inflammation and ulcers just seem to be part of my body all over sometimes.

Let me know if I can help you anymore...I here for you :grouphug:

[L. Thomas]

:hi: :hi: :hi:
:welcome:
Based on my symptoms my urogyn diagnosed IC. I compelted 2 surveys before my first appointment and we talked for about 2 hours about my the answers to the survey. :confused: I returned to his office 4 times a week for about 2 weeks for instillations. So basically he hit the nail on the head from just surveys and interview. :woohoo:


My treatment has been effective since the beginning. :pray: I just had to learn when I needed an instillation.

I know that this is unusal and I am extremely fortunate. :dance: Just know that there are a lot of things that can be tried.
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[L. Thomas]

You are in my prayers
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