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  1. #1
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    Exclamation Chronic urgency! No infection! No pain! Bladder feels full constantly!

    My symptoms all started about 4 months ago. I was at the casino overnight with some friends and we were drinking quite a bit of alcohol. I had to pee really bad but didnt want to get up from my machine. Then all of a sudden I got a sharp pain in my bladder area that really scared me so I ran to the bathroom and went normally. Later in the middle of the night I woke up feeling like I had to pee so i got up and went but afterwords it still felt like I had to go. I have had a few bladder infections but not in the past 10 years. (Im 28) and feeling like I had to go all the time was my always my primary symptom. So I thought I held it too long and gave myself an infection. Well my symptoms persisted the next day but since I had that sharp pain I thought I would wait awhile just to make sure I didnt just slightly damage my bladder from holding it too long. Well the second morning after i woke up feeling great so I assumed that was the issue but a week later i woke up feeling the symptoms again. So I made an appt and when i went the doc didnt even take a urine sample he just said "yep you have a uti" so he prescribed 3 days of cipro which i took and did feel better. Well a little over a month later the urgency feeling returned so i thought either the infection came back because it never completely healed or i had another infection. Went to a different doc who did urine sample and culture. There really wasnt any concrete evidence of an infection just slightly elevated wbc and trace of blood. But she said since the cipro seemed to alleviate everything the first time we would try it again. Prescribed cipro for 7 days this time. Seemed better the first 4 days then the 5th day of treatment the symtoms came back AGAIN! Then i was given Ditopan for bladder spasms and referred to a urologist. Had another urine test and culture which came back negative for any infection. Urologist suspects urethritis and prescribes another antibiotic called Doxycicline for 14 days and Ditropan XL for spasms. At this time sometimes my symptoms were so bad it felt like my bladder was completely full and someone was poking at it. All I could do was cry. I couldnt sleep and i missed work for a couple days as i couldnt even function. Went back to urologist and had another normal urine test but when i looked at the results it looked similar to the first one when my wbc were slightly elevated. But he didnt mention this so maybe being a little elevated is not that abnormal. Anyway he did a scope this time and everything looked normal! So frustrated at this point i want someone to find something!!! Well he presses on my urethra and says it looks a little red and wont give up on this whole urethritis thing even though i didnt feel any pain when he pressed on it. This time he prescribes levaquin another antibiotic for 30 days! And Vesicare for spasms. He says its just a matter of finding the right antibiotic I say he doesnt know whats going on so hes hoping if he keeps sending me away for longer periods of time it will resolve on its own! This whole situation is made so much harder by the fact that the first doc didnt take urine so now Im not even positive i ever had a UTI although the symptoms felt exactly the same. Well I took it upon myself to make an appt with a urogynecologist and am hoping she can help me but after reading so many heartbreaking stories of ongoing problems I am not encouraged. This is taking over everything.No one can understand the feeling of having to pee all the time and not being able to relieve yourself! I try to explain to people that its worse than pain its like torture that never stops! And its not like you can just go lie down and feel better it never feels better! Well anyway i am wondering if it could still be IC even though I dont have the pain as a primary symptom. Just the chronic urgency that is NOT relieved when I go and even when I just went and put my hand on my bladder it feels like im pressing on a FULL bladder. My bladder has a mind of its own and tells me its full constantly!I dont know if this is a nerve or muscle issue. Sometimes I think the meds are helping and sometimes it doesnt feel like they are doing a thing. Also the first sharp pain i felt right before this all started has been waved off by all docs. But is it a coincidence ? Especially since i had a bladder full of alcohol could that have gotten in the lining or something? Someone please HELP! I am on the verge of having to quit my job and I am depressed and cant live with this! Also should mention I dont think food or drink affects anything. Tried stopping coffee and soda and didnt even get slightly better. Also keeping a food journal and not noticing anything that makes it worse or better.
    Last edited by missyann; 07-06-2012 at 07:28 AM.

  2. #2
    ICN Member skybluesoul's Avatar
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    I wish you luck at the urogynecologist. Take a list of your questions and concerns and make the most of your appointment. I know the feeling you're describing, and it really is maddening! You know there's only a few drops in there, but it's so uncomfortable that you just have to go to the bathroom again and again. I hope this new doctor can give you some more insight/a solid diagnosis. You might consider an anti-histamine like atarax or a tricyclic anti-depressant like elavil or palemor (sp?). The anti-histamine has been a big help for me. Keep up with your food journal and pay very close attention to food labels. There are a lot of ingredients in things that you'd never expect. I know I was surprised when I first started looking into what I was eating.
    ----------------------
    -Amanda
    30 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010; acid reflux due to lactose intolerance May 2012
    I also have plantar fasciitis: diagnosed August 2011 (had foot surgery 6/28/12 and 11/15/12)

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Uribel as needed, Gabapentin 600 mg, Oral valium 2 mg twice a day, Myrbetriq 25mg, capsaicin cream (for vulva), and Prelief as needed
    Other treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture -- not sure to what extent this did or did not help

  3. #3
    ICN Member
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    Wow. I am in the same exact boat, a few minor differences but I feel like I am getting no where with doctors. I feel like they just want to throw this diagnosis of IC at me after talking to me for 10 minutes in the office and really there is some other stuff going on that they are not considering. I am on the verge of insanity also. I would looooovee to quit my job right not also. I do not have pain, nor have I ever had a uti, but I feel the constant annoyance that you feel and am also pondering the future after reading these posts. I just look at the good things that I have accomplished in my life and try to find a balance between loosing my mind and knowing that I WILL get past this. Hang in there. I have lots of tests coming back from my appointment last week with the urogynecologist.....it will be interesting to see their perspectives on things.

  4. #4
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    I am glad i am not alone. Well i went to the urogynecologist today and told her my story. Unlike the other docs who shrugged it off she thinks the incident with the sharp pain the night before this all started was very important. She also said she questions whether or not i ever had a uti to begin with. she thinks i stretched my bladder holding it too long and damaged the nerves of the bladder causing them to be extremely overactive. she doed not think its IC for a couple reasons. I have no pain only urgency and no frequency because emptying the bladder doesnt really give me any relief. (unless its actually full) Also she said the sudden onset of symptoms was weird even though i have heard some people with IC do get it suddenly. Also the fact that i have only drank water lately and while i havent changed my diet i would think that would at least help a little. Well any she tried the instill or whatever through a catheder and i dont really think it helped its hard to tell because the severity of the urgency changes over the course of the day,but it didnt magically cure me. She took a urine sample which i am positive comes back clean! She scheduled an ultrasound for mon july 23rd just to make sure it wasnt something else and they are doing a urodynamic study on tue july 17th. Which i dont think will be abnormal since i had no residual urine in my bladder and i dont have incontinence problems but i guess you have to go through the steps. My biggest concern is how do you even figure out if its nerve damage? also i dont understand if theres even a treatment option for that. I havent found anything online that seems like it would help!So im still really down.She seemed surprised that if it was nerve damage that it wouldnt have gotten any better but in fact its worse as at least in the beginning i had times where i didnt feel it and now its chronic! Thanks you guys for responding its nice to know someone knows what I am going through!Newbie, since we have the same symptoms please respond with your tests and results and i will do the same. Maybe one of us will get a solid diagnosis and be able to change the others life! Also how long have you been suffering with this and what was your onset of symptoms like?

  5. #5
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    I think that TENS, physical therapy techniques, and biofeedback may be options for nerve damage. There may be a medication or two that can help with that, I know one called gabapentin is used in my practice for nerve issues. I have no idea how the doctor will determine whether its nerve damage or not. Try to get some naturopathic info also, I feel that it's worth a shot, less side effects and all that. Some of these people on the site scare me because I'm a nurse and I look at their laundry list of medications and worry that too much medication may further imbalance the body creating more chaos. I like accupuncture and will be making an appointment very soon. Also, shiatsu is a good form of energy work, try it, you never know.

  6. #6
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    Hi

    I have that constant need to pee and its driving me mad and its very difficult to explain to anyone what this is like. I had a cystoscopy about 2 years ago and was diagnosed with IC. I had no previous bladder issues. No UTIs only the odd bout of cystitis. It really just came on suddenly which they say does not happen with IC. My daughter was in hospital at the time and I remember one day holding my pee for the whole day as there was a lot going on and I am sure this is what caused it. After I went to the loo on that occasion I just went straight into needing to go every minute. I did mention this to the urologist but he disregarded it. Its funny you feel that this is what caused your problem. I have never had any pain but it is the most uncomfortable feeling. Luckily I dont have any incontinence and if I need to hold it for a while I have no problem but again I think this aggrivates it even more. I went to another urologist for a second opinion. He did a urodynamics test and from the result of that felt it wasnt IC. My own doctor feels it is though. I tried detrusol with no effect. I was on 10mg of Amitriptyline which worked a bit but then got worse again so am now on 20 mg which I thought was working for a few days but I am as bad as ever now. Im off coffee etc but I really dont think this makes a difference. My sex life is terrible. If I do get a break from the constant peeing I try to make an effort to get back on track with my sex life (with my very understanding husband) but I think that makes me worse (although I am not sure if its coincidental). I am really interested to know if you have tried anything else or have had any good results with a particular medicine.

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