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View Full Version : Diagnosed w/ IC yesterday, 7/29/08


Renee11
07-30-2008, 03:41 PM
Hi everyone!

First of all, I just wanted to say that all of you suffering with this terrible disease are angels and truly heroes and survivors. :angel: IC is NOT easy to deal with and I feel all your pain. I understand all the mixed emotions and physical and psychological pain that comes along with this disease. I am right along side all of you, as I suffer as well. By the way, my name is Renee, I am 31 years old, I've been married to my husband since 2001 although we've been together since 1996; we are high school sweethearts! :) We have 2 dogs and 2 cats which we spoil to death...they love every minute of it and so do we! :lmao:

With that being said, I was just formally diagnosed yesterday by my urologist. I have been having IC symptoms since April 1st (yes, April Fool's Day! Looks like the joke's on me!) of this year. I want to believe that my symptoms started after I had a fall while running on my treadmill, because just a few short weeks after that incident, I began having frequent and urgent urination and some pressure in my pelvic area and lower back pain. Since then it has been downhill and I've developed different symptoms which I didn't have for the first month or two, like burning in the urethra area after eating tomato sauce (yike's). I also out of the blue developed IBS during the last few weeks. Not fun. :tsk:

My uro did an in-office cystoscopy a few months back and said my bladder looked fine. Since I've been complaining so much he decided to have me do the urodynamics test, which I did just last week. The results showed that my bladder capacity was 550 cc's and the only other thing he said is that when I go to urinate, my bladder/pelvic muscles tighten and spasm and my urine doesn't completely empty. I'm not sure if that is related to IC or not? He diagnosed me based on my test results and by my symptoms. He didn't bring up the hydrodistension under anesthesia and I didn't ask about it, but I'm thinking maybe I should since it has been known to be therapeutic in some people. I just hate the thought of anesthesia. I've never had to be put under before, for some reason it scares me to even think about it. :loco:

As far as my medications go, I'm already taking Elavil (past 7 yrs.) and Neurontin (past 5 yrs.) for my migraines, which I'm glad I already take since that might be why my pain level isn't through the roof! My uro wants to try Elmiron instillations within the next few weeks. He also put me on Urelle which has been helping a lot with the frequency and burning. :woohoo:

Overall, I am completely disappointed with my diagnosis, but I can't let it bring me down. I won't let it. As the saying goes..."what doesn't kill you will only make you stronger." I try to keep my spirits up as best as possible. I also suffer from incapacitating migraines which I've had since I was a pre-teen, so I am not new to pain and discomfort. It is part of me day in and day out. :bonk:

Thank you for reading this and big thanks to this site...it is truly a life-saver (and sanity saver, too!) :smile tee

dg2901
07-30-2008, 03:48 PM
Sorry to hear about your diagnosis. If its any consolation, you've come to the right place, if for no other reason than to vent frustration(s).

Looking forward to getting to "know" you.
Diana :)

motherof4
07-30-2008, 03:48 PM
Hi :welcome :)

c2miracle
07-30-2008, 03:51 PM
Hello Renee and :welcome: I am also a "newbie" and have found this site to be my saving grace :) You will gets lots of advice and total support from your fellow ICers. Take Care and Think Positive! :smile tee

elitynski
07-30-2008, 04:45 PM
Hello Renee - I was just curious was the 550 ccs capacity considered ok or low?

I have a Urodynamics test next week and I'm not sure what it's going to be like.

Also - was the Urodynamics test instrumental in diagnosing your IC?

Thanks - eric

Renee11
07-30-2008, 05:11 PM
Thanks everyone for your warm welcome! It is greatly appreciated. This site is fantastic and offers a wonderful and much needed support system. :woohoo:

@ elitynski...Hi there Eric...my urologist told me that 550 cc's was within the normal range. As far as if the urodynamics test was instrumental in diagnosing my IC, I'm not too sure. I really think that he ruled out all other possible causes of my symptoms first and then came to the conclusion that the offender was IC. My symptoms fit the IC bill perfectly. I think the urodynamics study was helpful in ruling out other problems with my bladder, such as possible neurological/urine flow issues. Good luck on your urodynamics study next week and please let me know what comes of it. Here's to symptom-free days REAL SOON! :pray:

hdb1982
07-30-2008, 05:33 PM
Hello Renee and :welcome: to the ICN :grouphug:

The urodynamics is a very helpful study for a few different reasons. The main being, in my opinion, that when your physician actually sees how your bladder is responding to urination he can put you on the best meds for your problems. Ie: straining, spasms, retention, weak stream etc. Since all of us with IC have different symptoms I think it is very beneficial for them to actually "see" what is going on before, during and after the actual process of urination. Due to my urodynamics study my dr was able to determine that I was straining a lot, I didn't even realize, that my bladders spasms very rapidly during and that I was not emptying completely. My spasms were lasting over a minute after I was done urinating.
I don't know if it is technically instrumental in terms of diagnosis but I think it is very important in terms of treatment. The procedure itself was not horrible in my opinion. I am not really bothered by catheters so I think that helped me a lot. To me a pap smear is much worse. The worse part for me was when the lido was wearing off, they used this to reduce the pain of the catheter insertion. When it was wearing off it kept giving me a false feeling of needing to urinate. So when it was wearing off, for about 45-60 minutes after the procedure, I was running to the bathroom ever 4-5 minutes. The nurse explained that it was completely normal and it was just the effects of the lido. That was enough to drive me batty. Lido doesn't have that affect on some, but for me it sure did.
I would highly suggest the urodynamics study to any IC'er. If for nothing else, just to get a good look at exactly what YOUR bladder is doing and not treating your symptoms based on what a "textbook IC patient experiences." If there is such a thing as a "textbook IC patient"!!!

Good luck next week Eric, by the way, it is nice to have a male on the boards. You can give us ladies insight as ti what our "lovely" husbands are thinking sometimes. LOL

chsmile2
07-30-2008, 06:41 PM
urodynamic!!

Hello Renee! I have had I.C. for a little over a year. I have had the urodynamic test and I must say I would recommend finding a doctor that will do that for you. I went to a specialist in Obstetrics & Gynecology. She was great!! I hate taking medicine so this test was good so that we knew which way to go with medicine. It has been a lot of trial and error. Every person responses differently it seems! One note: If something isn't working don't be affraid to bug your doctor to try new things or up a dose.

jaisa
07-30-2008, 07:01 PM
I remember when I was first dx'd over 3yrs ago I was so upset
and confused I did Elmiron right away and it did reduce my symptoms. Prelief and the IC diet were a big help with Ureleif plus for really bad days. You'll find your own way --this site is a big help. Make sure you have a good MD --if not switch and hang in there---Jaisa

VickiB
07-31-2008, 04:08 AM
Overall, I am completely disappointed with my diagnosis, but I can't let it bring me down. I won't let it.

Great attitude! Most of us do find our way to better days following diagnosis & treatment. Odds are you'll be one of them.

:welcome: to the ICN!

Vicki

SharonA
07-31-2008, 04:41 AM
:welcome: to the ICN... :)

Ninasmom
07-31-2008, 08:31 AM
I'm new to the boards and from what I've been reading, I'm wondering if I have IC.
Last summer, I went to the urologists for what I thought was a UTI. He told me that the tests they took came back negative. I went in twice and got the same response.
Now I'm having a flare up and a 10 day course of Bactrin hasn't touched the bladder problem, so I'm thinking I have IC.
I'm leaving in one week to go on a trip to CO. I've got to get rid of this before I travel. Open to any suggestions.... :pray:
Urelle or anything else?

Renee11
07-31-2008, 08:43 AM
I'm new to the boards and from what I've been reading, I'm wondering if I have IC.
Last summer, I went to the urologists for what I thought was a UTI. He told me that the tests they took came back negative. I went in twice and got the same response.
Now I'm having a flare up and a 10 day course of Bactrin hasn't touched the bladder problem, so I'm thinking I have IC.
I'm leaving in one week to go on a trip to CO. I've got to get rid of this before I travel. Open to any suggestions.... :pray:
Urelle or anything else?

Hello there Ninasmom, fellow newbie! I am sorry that you are in discomfort with your flare up. If it helps any, I am also in a flare at the moment because of my menstrual cycle. I dread "that time of the month" each month! :cussing:

My doctor gave me samples of Urelle to try out first before he wrote me a script for it, and it helps me out a lot. I've read on here that it doesn't help much for some people, but it's worth a try in my opinion if you are suffering and need to travel next week. Call your doctor and ask if he/she can give you samples to try. You sound like me with the negative urine cultures; I've had at least a dozen in the past few months and they always came back negative! It was driving me insane, I couldn't figure out why it felt like I had a constant UTI but no bacteria was ever found. Ugh. :bonk:

I wish you better days ahead and keep positive! Something's gotta give sooner or later. :smile tee

Renee11
07-31-2008, 08:47 AM
Thanks again for the warm welcome! It is so comforting to know that I'm not alone in this. :)

babygirlh1
08-01-2008, 10:28 AM
Welcome to the website :welcome:

I'm glad you don't want to let IC get you down. Now that my IC is quite under control I can say that I have more good days than bad. I wish I could pass some of those good days on to everyone because I will never forget how sick I was before medication. My heart goes out to anyone with IC that has even one single bad day (and I know many on here have many bad days in a row).
:smile tee

vm
08-01-2008, 02:46 PM
:welcome: Renee! Glad you found us! :)

lisabar36
08-02-2008, 03:59 AM
:hi: I want to welcome you. :welcome: I think you got some good advice. I am glad you found us. I know its hard to hear you have IC. But now atleast you know what your dealing with and can have treatment. Thats how I looked at it when I was diagnosed. I had problems for years before being diagnosed, never knowing what was wrong. I thought how can anyone get this many UTI's. When I finally found out, I was upset and relieved to finally know what was wrong. I am a firm believer in the diet. The diet along with my meds is what helps me the most. If I don't follow the diet, the meds do not help me, but both of them together, really help alot. :) Lisa

Believing
08-08-2008, 09:06 AM
Welcome, Renee!

I just started posting today, but I've been dealing with IC (in earnest) for the past year. Elmiron instillations were what stopped my HUGE flare last August. Over 3 months, we went from daily Elmiron instills, to every other day, to every 3 days, etc. I took oral Elimiron at the same time, and I did notice a difference after those 3 months. We stopped the instills and I stopped the oral Elmiron and remained on Utira-C and Neurontin (for my migraines and neuropathy). I am pain-free much of the time. I hope that gives you some hope!