Just found out

[lowartwolf]

Doctor *tried* to do a cystoscopy yesterday and it hurt so horribly bad that they couldn't finish it all. There's been blood in my urine ever since, though it's getting a little better.

I'm not sure how bad a case I have. The only food/drink that actually bothers me is caffienated beverages, like coffee or coke, and possibly hot foods with peppers in them. tomatoes, citrus, etc, don't seem to affect me in anyway. It's never hurt when I went to urinate, until after the procedure and during the catheritization a few weeks ago. Sex only hurts without a lot of lubrication, *most* of the time, so I feel that I may not be as bad as some and I hope that with medication maybe this will get better.

I'm just depressed over all of this. I couldn't stop crying yesterday, from pain and from realizing that this won't ever go away. I'm only twenty. I thought that this was unusual for people my age. I guess not.

[jrowley]

http://pages.prodigy.net/indianahawkeye/newpage12/17.gif to the board. I am so sorry your feeling so bad. Has your doctor talked to you about different treatments yet? Hopefully when he starts your treatment you will begin to feel better. Lots of http://pages.prodigy.net/rogerlori1/emoticons/hug1.gif to you.

[Betsie]

I wish this was a regular 'check" especially for women's health...something sent you to be evaluated, so syptoms do present themselves and Drs need to make time for them.

This is very difficult at first to comprehend and accept. Here is my just for now advice. Cry it out. when you feel you have spent enough time grieving over this dx...then get yourself together and learn as much as you can. And by that I sure don't mean who here has worse symtptoms, or who here is venting about a rotten day for a myriad of reasons.....I mean really get into the handbook on this site, found below by the IC link and read the many things you can do to help, what you should expect from your Dr., different treatment protocols and a million little hints for success.

You are only 20 and it just stinks!!!! No doubt about that....if possible stay 20 and fit this in to your life, no the opposite....very difficult at first, but generally your initial symptoms....usually horrible for us all...will in no way be an indicator of how you may feel a year from now. stay positive, find one person you can talk to and while you are learning about IC snd how it affects your life....try to stay 20...as you only get one shot at it....wish I could go back...with my oldest at 23, it is highly unlikely. LOL.

It is perfectly normal to feel as you are....what isn't normal is geting stuck there and consumed by this. So, when you are ready (soon ;) ) use your sense of humor and your knowledge to learn and live, not neccessarily in that order.

I feel so much better, but I have been where you are right now, and I know how hopeless it feels-if i could just spare you that time, I would, in a heatbeat.

Just so you know, there are many here that are your age, some post more often and still others are very busy with colege and pop in when they can. Look around or inquire after them. :) :)

[hisjenn]

wow... Betsie's advice was right on! and i hope you can put it into practice, because there's no secret "hurry up and get well" for any disease, but especially this one, except, accepting and taking charge of it.

the only other thing i would add to that is... don't be scared to tell the Dr. that a treatment isn't working or that you are having another symptom. The more you tell... not only can they help more, but they learn more... and we all need all the Drs. to learn more and more and more so that we can get the help and information we all need *grins* isn't it a great thought that our complaining will actually be doing everyone some good? LOL i love that theory!

i am sorry to hear that you have been diagnosed... it does sound like you caught it early, and maybe this will be the worst of it *smiles*

you hang in there and keep your chin up!

~jenn~

[mamamccoy]

I just got back from the 3rd different uro, and he says that there has not been enough testing done to diagnose, and that he would like to do eurodynamics-in office- and then 2 days later cystoscopy- in office! Just from what I have read, and experienced, neither one of these procedures sound like anything FUN! I was told, with my legs in stirrups, that i have decent muscle tone! How humiliating! Then he tells the nurse to teach me Kegels! I am sorry, I forgot that I was trying to make you feel better, only I have a couple of questions for you lowartwolf... what lead you to try and do this test? Sypmtoms?
Just wondering, I thought the diagnosis was already clear. Does anyone else have any feedback? Do you think this dr is just trying for insurance $ or is this truly the way to go?
Thanks,
mamamccoy

[kelly McC]

sending big gentle huggs your way.Good news is many find treatments that work for them and are doing very well. Yes your young right now it doesn't seem fair but have faith and keep hopeful. Educate yourself read and try not to let your bladder win. At first it can be overwhelming and you may be upset. You may have up and downs I did and still do but compared to 3 years ago I am in a much better place with far more ups.
Hope your feeling better Do you have anything for the pain?
Kelly

[Katrina]

:welcome: So hope you feel better soon. (((warm hug))) Betsie is so right! :kiss:

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

[melanie626]

Hang in there. I agree...cry and let it sink in, then strap on the information and go at it....these women have great advice, stories and tips and I have found them to be so helpful. I have had the disease since I was probably 6 and not diagnosed until I woneas 31...and I am having my first major flare now, at 33...I didn't really start using this site until now..but I am glad I have.

Everyone is different and we are all here to support eachother...

My father always says this, I hate it, but it is true..."Better days are coming"- campy, but true-

Melanie

[lowartwolf]

The thing that is bothering me the most is the complete and total lack of pain. I pee a LOT. they say they have found trace amounts of blood in my urine- not enough to taint it to any color other than yellow-clear. It hurt like heck when they did the cysto. But other than that- no pain. I have cut back on caffiene and carbonated beverages but even those didn't cause pain, just a bigger desire to pee. In the early stages does it just not hurt? If they've caught it in time, does this mean it's not going to get that bad?

He's got me on enablex only right now, I have to see him in two weeks or so for the potassium test.

[lowartwolf]

I just got back from the 3rd different uro, and he says that there has not been enough testing done to diagnose, and that he would like to do eurodynamics-in office- and then 2 days later cystoscopy- in office! Just from what I have read, and experienced, neither one of these procedures sound like anything FUN! I was told, with my legs in stirrups, that i have decent muscle tone! How humiliating! Then he tells the nurse to teach me Kegels! I am sorry, I forgot that I was trying to make you feel better, only I have a couple of questions for you lowartwolf... what lead you to try and do this test? Sypmtoms?
Just wondering, I thought the diagnosis was already clear. Does anyone else have any feedback? Do you think this dr is just trying for insurance $ or is this truly the way to go?
Thanks,
mamamccoy

I told my regular doctor I peed a lot. Twice i was on antibiotics for a UTI, even tho i told him it didn't really hurt when I peed, unless it was after, if you'll excuse the bluntess, rough sex. which I figured was normal.

He directed me to a uro, who said that my left kidney is a little inflamed, but he can't find anything in the kidneys or bladder, i'm not withholding urine when i pee.

with the eurodynamics test (?) i held quite a decent amount of urine, with a small percent of leakage, and no blood, i don't think, in the water. I was able to hold it all when I stood up, coughed, strained, etc. the catheter hurt and made my urethra hurt for about a day. ugh.

with the cysto, it hurt so damn bad when he tried to 'dialate my urethra' to get the camera in that they didn't even get it in as far as they should have and he said, then it's probably IC.

and that scared the heck out of me. and then i'm here, and reading the info he gave me about all these foods that cause 'flare ups', the glass feeling in the bladder, and i have not ever experienced any of this until that stupid metal tube was shoved into my bladder, and now, 36 hours later, i'm back to normal, peeing ever 2 hours, no more blood in my urine. i drank fruit juice like always, it didn't hurt to pee. had cheese, didn't hurt when i peed. i even drank root beer two days ago AND alchol, didn't effect my pee. I just pee a LOT. I told him that it doesn't hurt when I pee, I just have to go so often it's bothersome at times, that I CAN hold it, it's just not comfortable. He says this is the beginning of IC. I say it's been going on off and on for about two=three years and has never been painful.

I just want to know what is wrong with me. It's embaressing, having ti stop in the middle of sex to pee.

My BF is worried sick about me, and so is my GF.
(that story is for another time entirely!)

[Sarojini]

You've been given some great advice so I will just add my :welcome: to the others, and say I hope you're able to find the treatments that work for you quickly!! :)

[tifa]

Doctor *tried* to do a cystoscopy yesterday and it hurt so horribly bad that they couldn't finish it all. There's been blood in my urine ever since, though it's getting a little better.

I'm not sure how bad a case I have. The only food/drink that actually bothers me is caffienated beverages, like coffee or coke, and possibly hot foods with peppers in them. tomatoes, citrus, etc, don't seem to affect me in anyway. It's never hurt when I went to urinate, until after the procedure and during the catheritization a few weeks ago. Sex only hurts without a lot of lubrication, *most* of the time, so I feel that I may not be as bad as some and I hope that with medication maybe this will get better.

I'm just depressed over all of this. I couldn't stop crying yesterday, from pain and from realizing that this won't ever go away. I'm only twenty. I thought that this was unusual for people my age. I guess not.


Hi there

Just some words of reassurance - I'm 21 and have just been diagnosed - I also thought i was too young for this. I know how frustrating and upsetting it is to think you cant do anything about it and how not even doctors etc seem to fully understand it!

Just remember YOU ARE NOT ALONE.

and there are ways of managing it - its just finding things that work for you.

Dont worry I am at the same stage as you I think - feeling like :cussing: and :headbang:

[ICNDonna]

I'm sorry you had such a rough doctor's visit. I have to say that although what you have "might" be IC, it could also be something other than IC. You might talk to your doctor about a potassium sensitivity test, which does involve a catheter, but not a cystoscope. If you don't have pain and are going as long as two hours between voidings, it's very possible you don't have IC. The other option for diagnosis is a hydrodistention, which does involve a scope, but is done under anesthesia.

In the meantime, I suggest you read the information on IC symptoms and diagnosis in the Patient Handbook --- and put yourself on an IC diet to see if it helps.

Donna

[mamamccoy]

Thank you loneartwolf for telling me your story, although I do have an almost constant pain. I also can hold pee for longer than 2 hours, but it is uncomfortable. I am not sure if this is the uro that I need to let do testing. I would prefer to have it under anesthesia. The first uro inserted a catheter, about 10 months ago, and that sent me thru the roof. I felt like everytime I tried to pee after that bees were stinging!! The horrible pain lasted for about 2 days, and after countless warm baths finally subsided. That was just from inserting the catheter to see how much fluid it would hold. I thought it would be ok? From now on, I am not sure that it is a good idea. I will definitely NOT be going to the uro's office again by myself! It has got to be the most humiliating exp on the planet. I thought it was having a baby, but being a room with 2 people that you don't know and being asked to "squeeze my finger" (with vagina) was absolutely HUMILIATING! Sorry for the rant but I ahd to get it out. Thanks for your help!
mamamccoy

[mamamccoy]

sorry for the mis- spelling of your name--- i was trying to do it form memory!