Thread: how do I find out if it is IC ?
10-30-2004, 05:46 AM #1
- Join Date
- Oct 2004
how do I find out if it is IC ?
Hello, I don't know where to start - I'm reaching desperation and don't know what to do. I will try to explain briefly and appologise if I ramble on. About 5 months ago it felt like I was getting a UTI - I've never had one before but being a nurse I know the symptoms. Over about 3 days it got to the point where I was passing urine every half hour and the urgency was tremendous. The burning type discomfort and pressure in my bladder was also at it's worse. A nurse practioner gave me some Levaquin but it did nothing. I drank lots of water and took Cranberry juice and pain pills - nothing brought relief. A few days later it seems to subside but never fully went away. Now five or six months later it's never been as bad as that first time but I only seem to have a day or two where I don't feel aware of my bladder. I feel like I continually need to go to the rest room yet when I get there, even if I feel like I'm going to burst, there isn't as much urine there to show for acount for the feelings in my bladder. I feel some relief on passing urine but not full relief - it feels like my bladder isn't fully empty - but it is because no more urine comes out no matter how long I sit there - and I have sat there for a long time. I am not sleeping either and this seems to have started around the same time as the bladder symptoms. I can't get to sleep because of the 'feeling' that I need to urinate. It's not intense pain but it is an intense sensation to urinate. This might sound funny but it also feels like I'm continually on the verge of an orgasm (please don't laugh-it's awful and I'm crying now as I type this). If I do fall asleep I am woken up four or more times during the night thinking I need to urinate, so I get up and go and although I do pass some urine it's not that much. I'm sure I could have made it through the night with that amount in my bladder.
So now I don't have a job so I don't have health insurance. I can't find a job that I will be able to do - because of this horrible bladder problem - so how do I get health insurance so I can TRY to find some help and relief? If I use a credit card that is already almost maxed out - what tests will I have to pay for ? I might be able to afford somethings, but do would I have to pay for a cystoscopy? So here I am, I don't know which way to turn. I have no medication other than Ibuprofen and Clariten which don't help. Tylenol PM at least helps me get to sleep. I'm so sorry for going on so much but I don't know what to do. I'm so desperate for some help or advice or some relief or even some hope. I only have a boyfriend here but he is not being surportive or understanding at all and today I'm so depressed I smoked his cigerettes too. I quit when this first started and that's been hard to do.
sorry again to go on
10-30-2004, 06:25 AM #2
So sorry that you're going through this! It really does sound like you may have IC. The symptoms you've described are almost word for word how I'd describe what I went through, and it sure makes life miserable.
One thing I'd suggest is to have a look at the diet in the IC Handbook. Many of us have found a tremendous amount of relief just from eliminating certain food from our diet.
I am self-employed and have no health insurance to help pay for my doctor visits or medication. This may be related to the area in which one lives, but I've found the doctors in my area try very hard to serve those who can't easily afford their care. They tend to look for the most inexpensive route to take and still provide treatment. I believe that's why I was diagnosed using the Potassium Sensitvity test instead of cysto/hydro. Other than that, we have medical clinics which charge on a sliding scale related to one's income. Perhaps you have something like that in your area? Check with your county health district, they should be able to point you in a good direction. There are also some categories here on this board related to finding financial help with your medical expenses.
And most of all, don't give up hope! If you do have IC, most of us do go on to find treatments that give us back our lives.
Hope you get to feeling better soon!
10-30-2004, 08:43 AM #3
Hello and to the IC boards. It's never fun having the pain and frequency when it comes to your bladder. Have you made sure that you don't have a UTI? Like Vicki said there are clinics and Dr that work with you for payment, I hope you are able to find one and to get some releif. I have taken the OTC medication AZO and that also seems to work ok for me if I am not able to get in to see the Dr. Good luck with the job hunting hopefully you will find somethig soon. Keep us posted and I hope you find a Great Dr.
10-30-2004, 09:09 AM #4
you might be intitled to medicare.
vicki is right. try and only eat white rice, potatoes, some veggies like broccoli and spinach are okay, and drink evian water and milk only.
no tap water.
no acidic food at all. tomatoes, alcohol, soda, coffee, etc.
try no smoking. it makes it worse.
try to find a free clinic.
can a family member add you to their insurance?
you may have to move back home with family members, if that is possible...??
go to the doctor list link here:
call one of the uro's close to your home and see if they will work something out with you. tell them you think you have ic. maybe they will do a payment plan.
if you have worked for a certain amount of time, you may be able to get ss.
here is the link:
10-30-2004, 10:14 AM #5
- Join Date
- Oct 2004
thank you for your replies so far. In once sense it's just so good to be listened to. How awful is it though that you have to find that from strangers on the internet. I mean, when you supposdly live with a person who says he loves you. So I'm now looking around for a urologist and seeing if one will see me as a 'self pay' - I have to do something. I am also trying to find as much information on the IC diet and how to start it. Thanks for the tip not to drink tap water as I do drink 3 Liters of tap water a day!
Is it really true that most find relief from the diet change? I so hope so - I can't imagine getting relief from all this right now.
thanks again, and I really mean that.
10-30-2004, 10:34 AM #6
- Join Date
- Sep 2004
Misskek...you say : I feel like I continually need to go to the rest room yet when I get there, even if I feel like I'm going to burst, there isn't as much urine there to show for acount for the feelings in my bladder. I feel some relief on passing urine but not full relief - it feels like my bladder isn't fully empty
I felt like this 24/7 for 38 years...thankfully I now have a good uro and modern medicine that really helps...I am now almost "Normal" for the first time in my life..
I am certainly no doctor but there are some things you can do to help yourself...first try the I.C. diet...drinks lots of water....
is there a Health department or lo cost clinic nearby? Since you are having the very same exact symptoms I have lived with all my life it does sound like I.C...write down what you posted here and take it with you to the dr...tell him you think you have I.C..There are several medicines that have helped many of us...Elmiron, lo dose anti depressants, antihistamines ect...you just need to find the right combination that works for you...good luck and welcome to the board,,we are glad you found us...After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
10-30-2004, 10:47 AM #7
While it doesn't work for everybody, diet has made a world of difference for me.
One thing I'd wished I'd added to my post above,...I've yet to find a doctor who wouldn't accept self-pay, though many have seemed surprised by the fact that I would want to. (?) Most, in my experience, take off a percentage from the bill for someone who pays on the spot, which can be quite a savings. I've heard some doctors are actually going back to self-pay patients only, because of the reduction in billing overhead & headaches, they find they can provide care at less office expense.
Anyway, I do hope you find some answers. I remember how nice it was for me when I found this board and others who were experiencing the same symptoms as I. Quite a relief to talk to others who really knew what I was going through! It's also not unusual to feel like our partners are not always as supportive as we would hope. -That situation comes up a lot around here.
10-30-2004, 12:06 PM #8
Misskek, I was reading through your message and this got to me: <i>This might sound funny but it also feels like I'm continually on the verge of an orgasm.</i>
i have that too! i always wanted to tell my doctor or other people but its so embarrassing! I thought maybe it was just me because most people on here seen to feel burning, meanwhile im feeling like an orgasmic feeling. Its not like that though, it just feels kinda weird. haha this sounds so embarrassing!
do other people have this too?
10-30-2004, 12:21 PM #9
- Join Date
- Oct 2004
Hi 'this sucks' great name. I just want to say that I JUST read your post and I'm now crying as I reply. Oh God, this is so awful for me. I think I really did reach my breaking point today so I'm so glad I found this board and that I posted my feelings today. Even though I'm still feeling the discomfort, I've taken that much Ibuprofen that it's eased a little. I'm crying now though with relief that someone else out there feels what I do. THANK YOU for telling me I'm not alone.
I'm going to call my water company and get my water tested on Monday. I'm also going to try start the very basic diet and slowly introduce foods back. I'm also going to call a urologist that is local and says he has an interest in IC so that's a start, at least I wouldn't need to convince him I'm not an hysterical female. Once again, thank you all for the support offered to me today. It means a lot.
10-30-2004, 12:54 PM #10
- Join Date
- Sep 2004
The pressure I feel is "Heavy" " Full" ... I really can't explain it..I don't have burning, thank goodness....I always used to feel like my bladder was so full it was ready to explode...I would go to the toliet and 3 drops would come out..grrrrrr...Even with all my meds and Elmiron instills, the absolute most urine I can hold is 7 oz.....After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
10-30-2004, 02:20 PM #11
- Join Date
- Aug 2003
- Wherever the wind blows us as we love to travel! Originally from the Dayton, Ohio area. We now call Georgetown, TX home.
You have received lots of good advice so I would just like to add my welcome to the ICN. I completely understand how you feel about finding this website. I think many of us went through that same emotion. I, too, can identify with what you are going through. Your story is very similar to my own.
The diet helps a great many of us. For some, it brought a measure of relief almost immediately. For others, it takes a couple of weeks or so to start feeling better. Your bladder has been irritated by foods for awhile so don't be discouraged if it takes it a little time to calm down. The number one thing to stay away from is cranberry juice!!! When my symptoms suddenly began, it was the first thing I tried, too. We are told to drink cranberry juice for infections because it is believed the cranberry prevents bacteria from adhering to the bladder wall. What you haven't heard is that, in those of us with damaged bladder linings, cranberry is EXTREMELY irritating. It is so bad that for us, here in IC Land, it is commonly referred to as the "acid bomb". Foods do effect everyone's bladder so, even though you have not been diagnosed with IC, you are experiencing bladder symptoms and your bladder, no matter what is causing the problems, will benefit from your carefully following the diet. It certainly won't hurt you to try it.
Unfortunately, Vicki is correct. We often hear of partners failing to understand what we are going through. One suggestion would be to share IC info with your BF. Print out some of the information available on this website or show the website to him. You might also ask him to accompany you to your first few doctor's appointments. Men are "doers" and problem solvers. It is often difficult for them to handle something they can't see or solve. By giving your BF info on bladder disorders as well as suggesting things he can do for you (going to appts., planning bladder-friendly meals for you, etc), he becomes involved in your health care, can help you with health care decisions and has concrete things he can "do" to help you.
Please keep one more thing in mind. If it does turn out that you do have IC, there are many meds and treatments available. It may take some time, but the vast majority of us do find meds/treatments that work for us and do return to living active lives.
You certainly are not alone in this. We hope you will continue to post your questions and keep us updated on how you are doing. We're all here to help one another.
Last edited by Annie2; 10-30-2004 at 02:31 PM.
10-30-2004, 04:10 PM #12
I'm glad you are planning to make an appointment to see a urologist. I think it's important to have a diagnosis. You'll find a great deal of information, including the IC Diet, in the Patient Handbook at http://www.ic-network.com/handbook/ The diet may be a huge help to you.
Most ICers are able to drink tap water, but those in areas where there is a lot of clorine in the water sometimes have a problem with it. We have a well so no chemicals added and I drink that when I'm at home. When we travel, I do buy bottled spring water for drinking.
You might talk to the uro about a potassium test --- that would be less expensive than a hydrodistention with anesthesia.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
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