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  • Not sure where to go from here

    I have IC, VV, IBS from the muscle in the bowel not working right, and severe urinary retention.

    I have lots of allergies and react to lots of meds in ways not expected too.

    I spent years being bounced around by Dr's not being able to diagnose me as I never fit in one diagnoses nicely.

    I would be told I for sure had IC, only then to be told no it's not IC your bladder volume is too much.

    It turns out I have IC, but from years of retention from the muscle in my bladder not functioning right, my bladder is streached way out, I can pee more than 26 oz at one time, and due to loss of sensation in my bladder I don't even really feel like I have to go.

    From IC I always have the sensation that I need to go but I can never empty my bladder, and if I do by some chance get my bladder to empty it will spasam like mad as it is not used to being empty a state it does not like at all.

    The retention has been progressivly getting worse, a couple of weeks ago I was in full retention and had to go to the ER. Then I seemed to retain every third day for 24 hours, then again this week I was right on the verge of being in full retention.

    Vaginal Valium take 2x's per day will help, but then it returns.

    My Dr's has decided I should have the retention reasset, I have my 3rd uit in a little over a month, from bladder not emptying.

    Great timing as my uro had to close his practise due to health reasons.

    So I am now tring to find a uro who knows and treats IC and retention.

    I feel I have my IC for the most part under control although one does effect the other.

    Just to add another kick in the works I have a very low immunity, so I get infections more easily than other's and can fight them off either.

    Because of this my Dr. is very reluctant to let me self cath as my chances of infection is just too great, and the infection take their toll over time, especially once it spreads to my kidneys too.

    I live a 3 1/2 drive to the nearest place with a uro, I drove to this place this week and after 2 hours of driving I was in a full blown flare, both ways.

    If I am not driving it is not quite so bad but I can take more meds to prevent a flare.

    Now a uro wants to see me in about 10 days, I called his office before having my refferal sent to him and was told it was a 6 months wait to see him, but that he does see people based on priority need, so I was surprised when I got in to see him in 2 weeks.

    So I guess he agrees with my Dr. something needs to be done.

    My problem is he is an 8 hour drive away, and my husband can't take me, he will be working.

    The other thing is my son has been away for 11 months I have missed him terribly, he gets home the day before, I don't want to say hello god bye.

    A begger can't be choosy I just don't know how I am going to get to one city 6 hours away, drive there pick up my son drive back the next day, and then drive 8 hours the next day.

    I guess I will just have to figure it out.

    Just needing to write about my delema.

    My Dr. says I need to go to this uro appointment.

    My are with you all. May you all find a way to peace and joy in your lives.

  • #2
    MG so sorry to hear your hurting in more ways than one. Is it possible to pick your son up and stay overnight where your appointment is?
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily


    • #3
      where do I go from here

      I'm so sorry that you're having to struggle so much just to see a doctor.
      I was going to say the same thing that Green Eyes said, could you pick your son up and stay over? Or, could your DH take a day off to either pick up your son or drive you to the doctor? Or maybe a friend or another relative could help out? Is there any other way to get to the place where the doctor is, like a train, maybe?
      I wonder if the URO you are going to see knows of someone closer that might be able to schedule you in a reasonable amount of time.
      I wish I had some brilliant idea to share, but alas, my brain has pretty much stopped working in protest to lack of sleep! However, I'm sure lots more people will be posting with helpful suggestions. I just wanted to offer my support.
      Keep writing and update us.


      • #4
        I am so sorry that you have such a tremendous amount to deal with.
        You come to the right place for support are you on the IC diet? Hopefully your new Uro will have a good treatment plan for you. I wish you the best and let us know how things work out for you.
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5

          I am sorry you are going through all this.
          When I read your post, it struck me that your symptoms sound a lot like mine.
          I have a large bladder capacity and suffer from retention too.
          I do feel that my bladder muscles don't work properly, that is the reason I retain a lot.
          My frequency is not too bad (almost normal) and my pain gets a lot worse after urination. I guess this is due to spasms. My bladder likes to have some urine in it, I guess that is the reason why it never completely empties. I feel that, with an completely empty bladder, my pain and spasms would increase.
          What treatments have worked for you, besides the vaginal valium? I am currently trying that, but not sure it is helping.

          Hope you find some answers real soon.



          • #6
            I was just going to suggest an overnight stay. Is there any kind of public transportation you can use? I hope you can find a solution so you can see your doctor and still get to spend time with your son.

            Stay safe

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            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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            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


            • #7
              Part of my problem is I pick my son up in one City going east and south of where I live, I will go the day before at least maybe 2 days before.

              We can't stay the night the day I pick him up as he has to be at work the next am. Iam sure he would love to drive back but he is starting his day at 2am to drive 2 hours to the airport, 2 hour wait at the airport, a 1 hr flight an hour layover, flys out of Frankfurt Germany for I think an 11 hour flight, and then arrives in Western Canada in the am the next day. I know from traveling myself that even if he sleeps on the plane he willhave jet lag and will be tired. He has not driven in a year as he was not allowed todrive while away.

              If it was not for this I would give him my car let him drive home and I would fly to the City where my uro is, which is a 8 hr drive from my home and about a 12 hour from the city I have to pick my son up in.

              My husband dosen't have the type of job he can take a day off, if he does nobody else can work, and they are already racing against time. I am hoping the job is just done by then and then none of this will be a problem, he will just drive.

              My friends either work and can't take the time off or have small children and and 8 hour drive each way is too much to ask them to do.

              If I had more time I could go by train, but it only goes certian days of the week, and it won't work out.

              There also is a medical bus I could go on but samething the timing won't work.

              I have lots of faith and figure most thing work themselves out, and this will too or I will have to change my uro app, for a later date so I can use another form of transportation.

              At any rate I always stay over night if I have to travel very far, my bladder doesn't like to travel so the overnight is a must for me to cope, so that is already in place, what ever the plans end up being.

              healingthoughts: I do not have any other suggestions for the retention, I tried flowmax, it caused my retention to get much worse, I tried another med in the same class and I am really allergic to them now, so that's out.

              thanks for all of the suggestions MG

              PS someone asked if I follow the IC diet, I follow it to the T, I do not cheat as it is not worht it, I feel the diet, is the best thing I have done for IC.. My old uro said in his expirence the people who do the best with IC over the long haul no matter what else they do, do best if they follow the diet.

              Also where I live they have a real shortage of uro especially one who know anything about IC, this is the closest one.

              Thanks again for your imput
              Last edited by Mothergoose; 06-18-2011, 11:54 AM. Reason: Forgot to put in part of post
              My are with you all. May you all find a way to peace and joy in your lives.


              • #8
                oh my goodness MG, I am at a loss for words for you. I do wish I lived closer to you to help. can you imagine the experience the both of us and my kids LOL. sending big hugs to you.
                'The will of God will never take you where the Grace of God will not protect you.'


                • #9
                  Thanks, yes if we lived closer together, at least it would be easier to comiserate together.

                  As I said before it will all work out or I will make it all work out.

                  What I didn't put in my other post, was my dr feels I do need to see a uro for reassement of retention problems. So he sent out about 5 refferals to see who felt they could help my case and who could see me the soonest.

                  Another uro about 5 hours drive away, agian in a different direction, wants me to have 2 hand held bladder ultrasound tests a week a pert to see how much residual urine is in my bladder after voiding, I think he is going to use these results to see how soon I need to be seen. This is a 5 min test, each one, I can go anywhere they have one of these machines.

                  I am waiting to hear if a hospital just over 2 hours drive away, can and will do this test. If not it will be at least a 3 hour drive each way.

                  To boot this closest hospital, is not on the way to either city I have to go to next week.

                  I know this sound strange but I live in the mountains, where 3 mountain ranges meet, so when I go any where you are always having to go where these mountain ranges will let you go, or go around them, not many roads as well.

                  I am hopping the hospital 2 hrs away will do it, as I can easily drive there and back, plus they have good grocery stores and someone is always up for the ride there to do a bit of shopping.

                  I will keep you posted.

                  One week and 12 hrs till mt baby is home, can't wait.

                  have a good day MG
                  My are with you all. May you all find a way to peace and joy in your lives.


                  • #10
                    Sorry you are going through this..
                    I to suffered from severe retention.. I know this sounds crazy but I have high blood pressure and my dr put me on a diuretic. And to my surprise it helps with the retention..I still have some trouble emptying my bladder but it is not near as bad as it was before I started taking the diuretic..I do hope you find something that helps.. hugs

                    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

                    Link to Patient Handbook:

                    Diet Reference Sheet:

                    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                    Meds I have Tried:
                    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                    Lexapro< Bad reaction to this med!
                    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                    Dx With IC in Nov 2006 with Hydro/Cysto
                    Hydro/Cysto Caused Bladder to Rupture.

                    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

                    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


                    • #11
                      I am feeling better about the whole issue today.

                      I have been on Ab's all week from a UTI from the retention, I was feeling pretty good by Friday afternoon, I had started them the previous Sat.

                      I saw my Dr. on the Friday afternoon for a mole removal from my lady bits, uncomfortable but not too bad, he had warned me it would be quite painful, but compared to the pain I live with it was nothing. I ended up quite swollen and bruised, ans stitches are a bit itchy.

                      Aways by Friday night I didn't feel well and figured I was just over tired and went to bed early. I woke Sat am with a Temp, burning to pee, hard time to pee, ab pain and kidney pain. I had blood in my urine, and big pieces of tissue. I was the same on Sunday.

                      My dilemma was, did my infection spread to my kidneys which does happen to me lots, or a flare from the poking, pulling, and cutting of my lady bits.

                      Sunday eve my husband wanted to take his dad out for father's day dinner and to church so I thought I will get up and go maybe getting up and dressed I would feel better.

                      Well to say the least I didn't feel any better worse infact, so I go my husband to bring me home before church.

                      On the way home we talked about next week and all the driving I have to do. first he said he might be done his job by then so could drive. (yeah) I asked if he could take a day off to at least go pick our son up he said he didn't know, he hates to commit and let anyone down, then I said well I figured I was going to have to drive and he said obviously you are too sick to drive this far, if you can't drive home from town.

                      So at least he recognizes my limitations, so something will work out.

                      I am leaning to wards postponing the uro app for a few weeks, I know this sounds silly but I feel too sick to travel that far to go see him right now, and if I have an infection will he get any real results from tests anyways. Also I just know if he does an in office Cysto to have a look at my bladder it will send me into a big time flare, I just can't face it right now after fighting one thing after another for the last 5 weeks.

                      thank you for all the support

                      As for being sick or worse I have put in a call to my Dr. and am expecting a call from him anytime now, he is really good at calling me when I ask him too.

                      I have not tried diuretics, I will ask about that at my next Dr's app. I don't think he will Rx it for me as I already have low blood pressure and have to make sure I eat salt everyday to try to keep it up high enough for me not to be dizzy.

                      thanks MG
                      My are with you all. May you all find a way to peace and joy in your lives.


                      • #12
                        I spoke to my Dr. yesterday and he asked me to come in for blood work today and then wait for the results.

                        He thinks I may have got the flu on top of the UTI, hence the blood work.

                        I am not so sure it was a flu, I came very close to having to go to the ER last night, I was in a bad way with pressure and not being able to pee.

                        I decided to try to wait the night, which I did, and I went some this am, so i am a bit better, but I can see I did not go enought to empty. I am recording in and outs.

                        Thanks MG
                        My are with you all. May you all find a way to peace and joy in your lives.


                        • #13
                          I went to y Dr. today I have had a uti, I got a lot sicker with it over the weekend.

                          I spoke to my Dr, yesterday and he asked me to come in and have some blood work done today, he felt I had caught a stomach bug on top of the uti.

                          I was yea that could be true but why is my retention getting so much worse? He said come in and we will do the blood/urine tests and see what they show.

                          So I went in and had them, I had not been able to pee since about 2pm yesterday.

                          The blood tests showed my sodium was low, probably from the flu, but he felt a intravenous would correct this and make me feel better.

                          He then wanted to feel my belly, I was retaining so much I could barely stand to have him touch me, I was in full retention again.

                          So off to the ER for me, first they couldn't get the IV line in, I don't have good veins, or so they say. Then some pain meds, and meds to help relax my bladder to see if I could go. After an hour and a half I finally said I wanted to be cathed. I also asked this time to drain as much as they could, they were quite surprised when they got 54 oz out. Not a surprise to me. After they decided no more was going to come out I said I would try to go pee before I left and since I am supposed to be recording my In's and outs for a week, I wanted a hat to pee in. I quite easily peed another 10 Oz's.

                          So I don't think he knows what to do now, just wait till I get into a new uro, I guess.

                          But not a fun day for me.

                          My are with you all. May you all find a way to peace and joy in your lives.


                          • #14
                            where do I go from here

                            Oh my goodness, MG. You certinaly have been through it.
                            I hope tomorrow will be better and that you can get some answers.


                            • #15
                              Thank you Laurie I need that hug right about now.

                              I just feel I am missing out on so much lately, I always miss out on lots but I don't ussally care but it is getting at me lately.

                              Oh well chin up I will preserve.

                              Thanks for the replies MG
                              My are with you all. May you all find a way to peace and joy in your lives.