Urinary Retention/IC? Help!!

[rgreen]

So I have had a very frustrating past week. My urologist is treating me for what he believes to be IC, although he has not definitively diagnosed me. However, last Friday, all of a sudden I was unable to void. I just went into retention and nobody knows why, I don't know why, the urologist doesn't know why. He left the catheter in all weekend, had it taken out on Monday and I still couldn't pee, so he put it right back in. Well I have had the catheter in since Monday now, and yesterday he put me on Hytrin (Terazosin) to hopefully relax my urethra. He wants me to d/c my catheter tomorrow morning and do a voiding trial myself, obviously if I cannot go he wants me to come back in and he said he would have to cath me again until my scheduled appt. with him on Wed. where we will have to have a lengthy discussion about where to go next.

My thing is...he did cystoscopy, he did pyelogram and everything while I was under general...my bladder looked normal, he said I did have some Urethral Stenosis, which he had to dilate my urethra. So he has no idea what is wrong, and I have no idea, I don't know why I could be going into retention like this, does anybody have any idea?? Or have they heard of this at all???

Also, I just started the terazosin last night, I'll take my second dose tonight, but I take my catheter out tomorrow, will the medication really work that quickly? I'm afraid maybe I should be on it a little longer and then take the catheter out, but who knows.

This is all very confusing and VERY frustrating for me, nobody around me seems to understand this. On top of the retention, I still continuously am having the urgency and frequency in the worst way even though the catheter is in. He has talked about the InterStim and we actually are going to discuss that Wed. when I see him, but this retention thing has me all confused, and I am wondering if I am going to just "block" right back up tomorrow morning when I take it out. I'd really appreciate anyone's input/feedback, like I said, I feel like I'm in a dark hole here!!

Oh--and he also has me on the Pyridium, he's got me taking 600mg a day and I still am having the spasms, so I have had to take Valium on top of that!

Thanks!

[leelee88]

Hello and :welcome: To the ICN

I am so sorry you are dealing with all this..

First off, are you on any other meds besides Valium and Pyriduim? Some meds can actually make you go into retention. Also you could be having some PFD Pelvic Floor issues..That is another thing that can cause your muscles to tighten up and cause you to go into retention. The Urgency, Frequency feeling is something I had very bad after my Cysto/Hydro..So This could calm down after awhile..I do hope you get some relief soon..

[rgreen]

Thank you so much for your reply! I was on amitryptiline but I stopped that a couple weeks ago so he doesn't think it is that. But he did tell me to stop that. Other than that, I am on the terazosin (as of yesterday), valium and pyridium. I haven't tried anything new so he is stumped as to if it is medications. He did mention in March when I saw him the possibility of some of my problems being related to my pelvic floor muscles, so would that cause retention?

I dont know, it's just difficult, I've got so much between the IC symptoms, and he thinks also some of it may be related to my nerves and improper stimulation etc... I will be getting all of these answers Wed. at my appt. I am just concerned about tomorrow because I am taking the catheter out....I am wondering what the likelihood of me being unable to void is going to be (for a third time) especially worrisome because he does not know why it's happening.

[MommaWuzzi]

Well, since your urologist is stumped, I certainly don't have many more answers, but I can tell you that, for me, PFD plus antispasmodics (Sanctura) equalled retention - not complete - but I spent five hours thinking I was going to go insane because I HAD to go on my, well "normal" schedule, but I COULDN'T.

I am SO sorry you're going through this. I'd look into pelvic floor dysfunction issues, because that can cause me voiding and BM issues when it gets really crazy... (it was honestly what sent me in search of a doctor visit - I'd ignored all the other symptoms until that kicked in big time).

[leelee88]

From my own experience PFD DID cause retention.. And Meds like Elavil will do the same from my own experience.. But it really does sound like your pelvic floor muscles have tensed up.. When you are able to start going on your own TRY your best NOT to strain.. That will cause tension in the muscle and make it even harder for you to go.. I hope you get some answers..

[gatorgal]

I saw my uro-gyn yesterday, and she stated my urinary retention was a result of my PFD. Which makes sense because I also get constipated as a result of my PFD.
Taking hot baths relaxes my pelvic floor muscles and makes it easier to urinate. ( I sit on a bath pillow, so not to sit on a hard surface, which worsens my PFD)
I also will to deep breathing exercises on the toilet, and that sometimes helps.

[Mothergoose]

Hi I only have a minute I will try to write more tomorrow for you. I have IC and severe urinary retention. Alot of meds makes my retention worse including the pyridium. If I get cath for any reason it makes my retention worse for 4-5 days, I go down to a dribble and sitting on the toliet permenately to get any amount out.

Feel free to PM with any questions, I will try to get back to you, I am just very busy lately.

Yes my retention was worse after having my urethra streached, and worse after cysto, and hydro, and DMSO treatment. Yes even though I can't go or can only go a bit at a time I still have urgency and frequency, it is not nice at all, I do really feel for you, but I have no answers for you. I use a heating pad alot, this does help for me. Muscel relaxers amke me worse as well as a lot of other meds.

I do have IC, PFD, IBS, ovarian cysts and other things, my newest uro feels alot of the retention stems from pain.

Sorry I really have to go, PM me anything you want to know, this is a way of life for me, for a long time my doctors could not figure out if I had IC or just retention but after more testing we now know it is both. But it is just his best guess that the retention is from the pain, I believe this but I think it is also from my muscels spasaming too, and I really have to be careful what meds I take, no OAB meds for me, no edvil or drugs in this class, and many others that I can't think about now.

Got to go keep in touch you are not alone with this.

MG

[rgreen]

I really appreciate everyone's help and support here, it is very comforting and I love knowing that there are people here who understand what I'm talking about.

I took the catheter out this morning about an hour ago, still have not voided (although it's only been an hour) But I have that feeling as though my bladder is full, so I am going to wait a bit, I'll call my doctor around 10 or 11 if I still haven't voided (unless the pain becomes too unbearable) I just dread the thought of having ANOTHER catheter in there.

MG-I will definitely PM you, I really appreciate your input. Thank you all so much. I'm just *crossing my fingers this goes well*

[leelee88]

Something you could try is sitting in a warm bath. This will help relax those muscles and may help you void on your own.. AND yes I forgot to mention.. Antispasm meds like Pyridium makes me have some retention.

[rgreen]

I really appreciate everyone's help and responses. I did hear the warm bath thing, so I have tried it in the past but it didn't help, something about it's supposed to relax the muscles?

Anyways---the doctor had to put the catheter right back in on Friday morning, and I have had it in since. Sad thing is, I don't even feel it, when they're putting it in anymore. :( That's a sad sign!

When I talked to him Friday he sounded very disappointed that I wasn't able to void. So it's just very frustrating. I sent him along an e-mail Friday afternoon about my medications and stuff and he actually brought up urodynamics for the first time....this was what he had to say:

Renee:
I will take care of it. I'm not sure yet as to why you are having these problems, but we will figure it out! Leave the cath in until I see you on Wednesday. We will likely do a urodynamics to better understand the problem.

John Stoffel

-----Original Message-----
From: Green, Renee
Sent: Friday, June 05, 2009 11:57 AM
To: Stoffel, John T.
Subject: RX Question for Renee Green

Dr. Stoffel,

I forgot to mention this when I was in your office today to have the catheter put back in, and there was a little confusion about the pyridium RX with your office. I spoke to Ana yesterday and she told me to take 200mg q.am 100mg in the afternoon and 200mg again in the pm. I've been doing this (and it is helping quite a bit) however, the original RX you wrote for me was TID, I'm going to run out by the end of tomorrow, if you could call in a new RX to Rite Aid in Billerica (978-663-1887) I would really appreciate it. I know the RX you gave me had refills but because it is a change in direction the insurance will not pay for it. My Lahey # is 2512189 If there are any problems my home phone is 781-365-0229.

And Lucille called me to tell me to keep the catheter in until I see you Wednesday, but I am unsure whether I am taking the catheter out myself Wednesday morning or leaving it in until I see you? (I'm seeing you at the end of the day) I don't have the syringe to d/c it myself that's why I am wondering.

Thanks for all of your help, I really appreciate it. This has been a very frustrating time for me and I appreciate all you've helped with!

Have a great weekend!

Renee Green
Lahey Clinic Medical Center
Department of General Internal Medicine
O. 781-744-8413
F. 781-744-5349


So....I have to have this in until Wednesday. Anybody who has had catheters before (this was my first time) do you have that horrible urgency feeling etc?? I mean I know my bladder is constantly draining, but I feel like I need to go SO bad, and I'm also having a lot of mucous in my urine because I can see it passing through the tube. (Sorry to be so graphic) I'm not sure what kind of urodynamics he is going to do yet. I will find out on Wed. when I see him.

Lastly...(for now) I know I have so many questions! But I originally was seeing him for Freq. Urgency, Incontinence at times, and bladder pain...which is how he came to the conclusion of OAB and IC...but now for some reason I am in retention, is it possible that whenever we figure out the retention issue I could go back to those previous symptom's? It just seems so weird to me how I can go from going TOO much to just retention completely. He's got me on Pyridium 200mg now TID. So he increased it by a lot, and I think it is helping relieve some of the symptom's with the catheter.

Well...sorry to write a book, I just have so many questions and ahh! Thanks again for listening and for your help!!!

[MommaWuzzi]

I would call the doctor and let him know about the mucous and how much urgency you're feeling. I asked my hubby (a nurse) - he said he wouldn't say for 100%, but around an 80% chance that you have an infection (which can happen...). Even if he's being conservative because there's a 50% chance... the fact that you're noticing it suggests there's a change, and I would call him just to be sure.

I am SO sorry you're going through this. I know that when things get angry for me it can take FOREVER to get started, and sometimes I'll go back and forth to the bathroom reapeatedly, sitting... waiting, counting, fidgeting... the worst time was after a DMSO instill, and a friend told me that she was told by a nurse that it sounds gross, but if you relax enough to go IN THE BATH, go ahead and go - urine is sterile, and you can always stand up, drain the tub and take a shower afterwards.

Sending up a prayer for you...

[BT2008]

I am so sorry to hear that your having such a hard time!! Here's a big (((HUG)))!!

Over the past seven years, 99.99% of the time my problem is frequency, BUT--every now and then, right out of the blue, I will have a bout of retention, even though I have been on a low dose diuretic for many years. I would say its happened about four or five times, but it always corrected itself in a day or so, so I didn't give it much thought. Of course, I didn't know anything about IC back then...

The most recent time was on May 31st (a week or so ago). Since I usually pee at least every hour or so, I noticed after two hours that I hadn't peed, and again after another hour. I just thought, "Hey this is Great!! I will save at least half a roll of toilet paper!!" lol...

But...after another hour or so I started to become concerned, because I had been drinking water the whole time. I went and tried to pee several times over the next hour or more--even though I never felt the urge to do so--and, of course, I couldn't. Since it was a day that I had a regularly scheduled instill, I didn't sweat it any longer and I went ahead and cathed as usual. It had been over six hours since I had peed.

What's so strange is that I cathed only about 200cc of urine, and I KNEW that there had to be three or four times that much in my bladder! When the instill meds had been in there for three hours, I tried to pee again, and nothing came out. Of course, it's 1:00am by this time, so I couldn't call the doc, but knew that if I didn't go eventually, I could always cath again and call him the next morning. So, I went to bed. I woke up about two hours later with my usual "pee-on-demand" symptoms, and went to pee normally once again. SO, I don't know what the problem was, but apparently either the instill meds "fixed it" or my bladder just decided to cut the crap!! But, since then I am back to my usual 18+ times a day!

So, who knows? This disease has to be "the disease" to beat all diseases when it comes to the unpredictability of everything involved.

But I truly hope in your case that it's nothing serious! Please let us know after you see the uro on Wed. Hang in there, ok?

More Hugs,
~Beth

[ICNDonna]

When did you have your procedures done with anesthesia? I know that after my first bladder procedure it took me over a week before I could urinate on my own. One thing I do advise is to avoid straining --- I know it's the "natural" thing we do when we can't go, but straining will irritate those muscles even more.

Donna

[rgreen]

I cannot thank you guys for all of your time and help! Really talking to you ladies has helped me a lot! I just got a phone call from the Urologist that he wants to cancel my regular "follow up" appt. with him this Wed afternoon and instead he has scheduled me for Urodynamics at 9am on Wed. so that works out better, because I will tell you it is getting worse with the catheter! I was out of work on Thurs and Fri. but I came into work today and am planning on coming tomorrow and obviously Wed.

I don't know what the Urodynamics pertain though, what exactly do they do?? Has anybody here had them done?? He told me it would take about an hour or so.... but I don't know what they do! Will I be okay to go to work afterwards or am I going to be in pain? Any information about the Urodynamics would be much appreciated. I know there is a thread on this forum pertaining just to that so I'm going to check that out too!

Also, Donna---I had my cystoscopy and exam under anesthsia back in February. I seemed to be okay for the first couple of weeks and then it just all came right back, but this retention thing is new, new to me.

I can't wait for Wed. appt, but I'm also nervous about it!!!

[hellmie]

I definitely feel it is the Elavil. Since I have starting upping my dose from 10 mgs to 20 and now 30, urine retention is terrible. For me, I dread when that urge appears. I have to run the faucet like I did for my girls when they were babies and being toilet trained. So I run the water, I flush the toilet, I sit and sit and sit. It is so upsetting. Of course, after finally releasing it all, then I can expect stomach pains. So here I am at work, sitting with a heating pad, sipping Chamomile tea, and having taken 2 oxycontin. The Oxy is the only thing that seems to help the pain. I am by no means addicted, but if I don't take them when I wake up in the morning, I surely have to take them sometime during the day. My husband and I only go on mini-trips. Of course, right along with my make-up and clothes is my heating pad. I keep telling myself I have to learn to live with this, BUT WHY. I DON'T WANT TO. I have gained so much weight from the Elavil, does anyone have any answers to keep you mouth shut and not eating anything that doesn't move. Send me your weight secrets. I really do not want to stop the Elavil because I do think my pain has lessened since starting it. My doctor also prescribed Neurontin which I only take 600 mgs a day. I know I should take more, but it makes me tired along with my other pills. I take Provigil to keep me awake.
Well that is all for now. Have a pain-free day.:toilet:

[hellmie]

I forgot to mention my left foot can get as big as a house. I don't know if it is water retention, because I don't drink a lot. ?????Anybody else have the same problem

[ICNDonna]

I had urodynamics done over thirty years ago when I was in the "ruling out" process before my IC was diagnosed. I don't remember a lot about it, but it did involve being catheterized and I remember being told it was to check bladder muscles. The test wasn't bad at all.

If you continue to have retention issues, you might want to talk with your doctor about the possibility of learning to catheterize yourself. I haven't had to do that for a long time, but just knowing I can is a real comfort to me.

I hope you get some answers at your Wednesday appointment.

Donna

[rgreen]

I had urodynamics done over thirty years ago when I was in the "ruling out" process before my IC was diagnosed. I don't remember a lot about it, but it did involve being catheterized and I remember being told it was to check bladder muscles. The test wasn't bad at all.

If you continue to have retention issues, you might want to talk with your doctor about the possibility of learning to catheterize yourself. I haven't had to do that for a long time, but just knowing I can is a real comfort to me.

I hope you get some answers at your Wednesday appointment.

Donna

Thank you so much, Donna for all your input, it is a great comfort! He did talk to me about the self cathing and he told me that I most likely was not a good candidate for it (I am not sure why) I assume we will bring that up more tomorrow after my tests. But who knows. I have had a lot of urine leaking around the catheter, I am wondering if this is a sign the terazosin is starting to work and relaxing my urethra??

[rgreen]

So I had my Urodynamics test done today....it wasn't all that bad, like the catheters and what not, the bad part was when they were filling my bladder it just hurt so much. She was barely able to fill it before I could feel it and was in such huge amount of pain. I had the huge, strong urge to pee, I totally couldn't, so they took me off the bed thing and had me sit and try to go, still couldn't; they left the room thinking I was just "shy", I still couldn't! It was just *so* frustrating for me! They didn't make me try anymore, I was almost in tears the pain was so bad. So I went in the exam room and the doctor came in and talked to me, and he said my pelvic floor muscles are working normally, my bladder is just not contracting at all when it is time for me to go. So I need to "train" my bladder. He put the catheter right back in and what he is going to do is have me plug it and empty it every 3 hours to try to get it to expand and then be able to contract. He also increased my Hytrin medication. I'm going to come back to him for a voiding trial next week, I believe he said, (I don't know there was so much information at once.) And hopefully, I will be able to void.

He said this is something he could fix surgically tomorrow but because I am so young, the procedure he has in mind has no studies with pregnancy, so he does not want to use that option if it is not needed. All in all...the test itself was not horrible, the aftermath of me having to wait for them to drain my bladder was the worst part of it all! I'm here at work, in a little discomfort, he did tell me to go home early; but I'm going to stick it out as long as I can! The whole thing is just so continuously frustrating, and I now know at least he understands this in speaking to him today.

So....for another week I have the catheter in, and we'll see what happens!

[BT2008]

Hey rgreen,

I am glad that it wasn't too bad! But, I am sorry to hear that you didn't get an answer as to what the problem is!! I can see where that would be totally frustrating!! Maybe between now and next week, either the problem will correct itself, or your uro will come up with something that fix it. I hope so for your sake!

Let us know how its going...

Hugs,
~Beth

**************************

Hey Hellmie,


I forgot to mention my left foot can get as big as a house. I don't know if it is water retention, because I don't drink a lot. ?????Anybody else have the same problemYes! I have this problem from time to time--and just in my left foot as well! In fact, it was a huge (lol...no pun intended!) problem previous to being hit with severe IC last summer (2008), and retention is always an issue when this happens. But, it has only happened maybe a dozen or so times in the past year, and it usually corrects itself within a day or two.

I mentioned it first to my uro's assistant and then to my uro. His assistant said that it probably wasn't due to kidney/bladder malfunction, rather it usually denotes high blood pressure problems--even though I told her that I regularly have very low blood pressure. When I mentioned it to my uro he didn't say much, but it wasn't swollen when I was there, so he couldn't see it for himself, and we have had other more pressing things to discuss. I haven't had that problem for a couple of months now, but if it happens again I will press him further.

What does your uro/doc say about it?

Hugs,
~Beth
P.S. May I strongly suggest that you start drinking lots of water everyday?? As close to a gallon as you can get. The best thing you can do for your IC bladder is to keep your urine as diluted as possible, which will help keep your pain and other symptoms from being out of control so much.

[rgreen]

Well things have gone downhill since the Urodynamics, I went back to my Urologist yesterday afternoon because I have just been having severe, severe bladder pain, and he admitted me to the hospital immediately. They've contrlled my pain well now, with IV medication. I do have a kidney infection on top of this so I am receiving treatment for that, hopefully I will be able to go home tomorrow, however, I will have to leave the catheter in for quite a while because my uro. goes on vacation Mon-Mon. Then I'll go back to him, and I think we are going to talk about the InterStim placement, he was holding that off as long as he could only because of the lack of studies and pregnancy, but he told me I could always have it reversed if I decide I was children, so that will hopefully/most likely be our next step.

I did however have 5 different MRI's done last night he orderd, from 11pm-4am I was having MRI's, it was absolutely horible! I'm so happy that is done now, and I am finally no longer NPO! I am about to finally eat, yay!

Does anybody have any information regarding the InterStim, he has talked very highly about it, but I was just curious.

[SharonA]

Here is a link to an article regarding the Interstim found in the Patient Handbook: http://www.ic-network.com/handbook/nerve.html#Surg

You can also find a lot of posts from members who have the implant and how it does or does not help them by doing a search in the search engine. Look towards the top of this page for the "Search" button in the dark blue tool ribbon. I suggest you do a lot of research before agreeing to have this surgery done.

(((Hugs)))

[rgreen]

Thank you for your advise. I am on full bed rest right now. The doctor has me on high high pain medication. (Morphine, Percocet, Vicodin) and can I be honest?? I'm taking it, and I'm still feeling pain. I hate taking this crap, it just makes me feel like a zombie, but since I am on bed rest, I suppose that is okay. I tried working a couple of times since I was discharged from the hospital, absolutely impossible. So now thye've got me working on disability papers for work and school. It's been very difficult.

We are going to talk about the InterStim,I have done a lot of research on it since he spoke to me, and I am unsure of it, but at the same time I have heard great things. So I am uneasy. I spoke to the resident last night on the phone and he is telling me the surgeon might have other options for me. So I'm not sure, I'll just have to wait until Monday to find out!!!

I have though, been officially diagnosed with IC. When I was in the hospital. (Not that is comes as a surprise, we all kind of knew and figured it, but now it has become official.)

[BT2008]

The doctor has me on high high pain medication. (Morphine, Percocet, Vicodin) and can I be honest?? I'm taking it, and I'm still feeling pain. I hate taking this crap, it just makes me feel like a zombie, but since I am on bed rest, I suppose that is okay.I am right here with you rgreen--in many ways. I have been trouble-shooting Severe IC on a daily basis for over a year now. I take MS Contin 3 times a day, Lortab for breakthrough pain, and do bladder instills 3 times a week or as needed for rescue from a really bad flare. I am also on a very strict IC diet as well.

All of these things help tremendously, but I remain physically disabled and I am still in unacceptable pain on a regular basis! But--the pain is not as severe as it would be without the strong pain meds, and just the thought of moving into the severe ranges totally terrifies me! That is why I take the MS Contin every eight hours (I set the alarm clock so I don't miss a dose), and I take the Lortab whenever the pain starts to move out of the moderate range. When things are going well, I am able to enjoy 2-3-4 levels of pain for several hours at a time, as long as I don't do much of anything physical and no evil ingredients makes their way into my food. If either of those things happen, then my pain roars into the moderate to severe level within minutes or a few hours. If I don't stop the pain at the moderate level, then I am in for an extremely rough ride for several days or more. I frankly do not know how I manage to survive the flares that go into the severe range and stay that way for days. There have been too many times when I was sure I would not make it without having a stroke or a heart attack. But, so far, so good--if you want to use the word "good" in this at all...

Further, like you, the drugs are very hard on me in maintaining a clear and discerning mind; I am sleeping now more than I have ever slept before, and I have never been one to like to lay in bed all the time. I try to stay upright here in my desk chair as much as possible. But--like you, since I can't go anywhere or do anything, it doesn't really matter I suppose. I very willingly take these meds because I will go to great lengths to avoid the severest pain levels, which is what immediately happens without the meds. And the PAIN is just not worth it! So, choosing between "my brain and pain" has not been an easy choice to make, but I am making that choice every eight hours to keep the pain away. I guess its self-preservation at work. The lesser of the two evils...that sort of thing.

Living with Severe IC is very hard on a person. I have always been a very strong person, but the highest rung on my "bar of strength" has been reached and surpassed on many occasions since being hit with the severity of this disease. And, quite frankly, I continue to be shocked that IC is given so little attention in the medical world when compared to cancer and other serious diseases.

Back in January, my urologist told me that there is nothing else that can be done for me "except to keep me as comfortable as possible with the pain meds" and further suggested that I go ahead and file for SSA disability. It took me several months to accept the fact that "this is it"--that this is what my life is going to be like, for the rest of my life, until either a cure comes along or I go into some sort of spontaneous remission--or I die of another cause. So, snapping out of my denial, I finally filed for SSD on May 2, and I am trying very hard to make some sort of life out of what is left of my life. But--it is not easy.
We are going to talk about the InterStim,I have done a lot of research on it since he spoke to me, and I am unsure of it, but at the same time I have heard great things. So I am uneasy.I had also checked very thoroughly into the InterStim as well, and since PAIN is my biggest problem--and the InterStim does NOTHING for PAIN--then it would be a total waste of time and money for me to go through all of that. But I don't have the retention problem that you have. Just make sure you read all the threads on that topic: from what I was able to learn, it does work well for frequency, for a while anyway, but it does nothing for bladder pain, and usually comes with its own set of painful problems. And I don't recall reading anything about severe retention problems. So, just read, read, read, and try to think as clearly as you can about the InterStim. I am not willing to "just try anything" unless I know that it will address the disabling aspects of my version of this disease. My body is going through enough on a daily basis; I don't need to borrow more trouble out of desperation...

I spoke to the resident last night on the phone and he is telling me the surgeon might have other options for me. So I'm not sure, I'll just have to wait until Monday to find out!!!I would love to know what those "other options" are! So, please let us know! I go back to my urologist tomorrow for my monthly appt, and I will ask him once again if he will please consider just taking my bladder out altogether! I have been in this same precarious place for over a year now--with only a few mild pain days here and there--and everything in our lives totally depends upon "what my pain level is" at the moment. This is no way to live!

I would like to also mention that over the course of the past year, I have been through repeated phases of retention (although not nearly as bad as you!), serious frequency, painful spasms with dribble-itis, and recently I have even had four occasions where I get "one signal urge" that I have to pee, and -- as embarrassing as it is to post this on the open forum -- I wet myself before I can even make it to the toilet! This is extremely distressing on top of everything else, because now I am even more afraid of leaving the house then ever before!

So, rgreen, I am right here with you in many ways. If you need to PM someone, just click on my name. But please continue to keep us posted after your appt on Monday. I have no idea what my uro will say to me tomorrow, but this is the first appt since having my second cysto/hydro back in May. He went in to hopefully burn off some of the lesions in an attempt to bring my pain levels down as much as possible, but he told me on the phone that "there were thousands of lesions" so he didn't remove any--he didn't think it would help me any at all. So--here I sit, in status-quo! And YOU ARE NOT ALONE...:kissing:

:grouphug:
~Beth

p.s. On my previous post, dated 6/8, I stated that 99.99% of my problem was "frequency" rather than "retention" but I should clarify that this percentage pertains only to the urination aspect of this disease. I have lived a normal enough life with the frequency for the past seven years, but when it progressed into Severe IC in June 2008, 99.99% of my problem became PAIN, and all bets on "normal" were immediately thrown out! I just wanted to clear that up for you in case it was confusing.

[rgreen]

I saw my urologist today and rather than retype everything my thread is here....

http://www.ic-network.com/forum/showthread.php?p=495174#post495174

But basically, he thinks I went into frank retention like this because of a bad UTI or inflammation or a combination of both or a flare up, he thinks it really hurt the muscles in my bladder and now they "don't know how to work" so he wants to do the InterStim to "reteach the bladder" is kind of how he put it. At this point I told him, I am willing to try anything to get me one step closer to feeling somewhat normal/better than I do at the moment!!! The only sucky thing is he did take the catheter out today, he thinks it's causing more damage than good, and I have to self cath until my surgery every 3 hours...he taught me how to do that today and I don't really like it, it's something I'm dreading having to do for the next 7 days, BUT it could be worse....

[MissGlass]

:loco::loco:i also have severe retention i've had to go to the ER 2 times this month to be "drained". does anybody have problems with SEVERE pain w/ caths? the er doc said he coudn't give me anything for pain bc it shouldn't hurt. even tho i passed out during the cath. anyways pain/retention have been my only two major syptoms (frequency too but i only dribble bc of the retention).

[rgreen]

:loco::loco:i also have severe retention i've had to go to the ER 2 times this month to be "drained". does anybody have problems with SEVERE pain w/ caths? the er doc said he coudn't give me anything for pain bc it shouldn't hurt. even tho i passed out during the cath. anyways pain/retention have been my only two major syptoms (frequency too but i only dribble bc of the retention).

The doctor is a horrible liar then because I was just recently ADMITTED to the hospital because I was in so much pain in regards to the catheter as well as bladder spasm pain FROM the catheter. He took my catheter out yesterday and I am doing self intermittent catherterization which I'm not thrilled about, but I only have to keep up with it until next Tuesday when I have my InterStim placement. I really feel you with the severe pain, and I had my catheter in for a MONTH! I am SO relieved it is out, but hate self cathing at the same time.

[Mothergoose]

About cathing and retention. I have severe urinary retention as well, I find I will do almost anything rather than get cathed, not because the cathing causes too much pain, but after cathing for sure I can' t pee, it is such a visious circle.

MG