Announcement

Collapse
No announcement yet.

still not diganosed yet

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • still not diganosed yet

    Hey everyone I had my hydro-distention in Feb. My urologist never really gave me a diagnosis for my condition, I have urinary retention, pelvic pain and urinary frequency and pain if I don't urinate and pain after urinating.my urologist has been seeing me for a year and has done a urodyamic test, hydro-distention, sensitivity test and still isn't quite sure whats causing everything. I used a Foley catheter when I get retention, which was causing problems he suggested a supra-pubic catheter. I had it done and its been nothing but problems it seemed to make everything wrose including the pain. he has now decided to try Elavil along with vicoden he is also trying to get the Iterstim therapy to be approved because my insurance doesn't cover it. I'm feeling hopeless and just hoping one therapy he tries will help. is it possible to have what he calls "chronic retention" with IC?

  • #2
    I think that some people have retention, that's not one of my symptoms. From what I have understood though all other options should be tried before you try the Interstim. How can he have tried all other options and therapies if he hasn't even admitted that you have IC? That makes me nervous, I would really read up on the interstim and talk to your dr alot. There are a lot of members here that have it and I'm sure they will speak up.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      hes never told me I have IC or even diagnosed me yet because he has no clue whats wrong with me. at first he thought I had IC but have had a catheter in a few months before I had my distention he said the test was normal redness from the catheter, I started getting retention after my son was born but before he was born just had pain frequency and urgncy. I dont know if hes just pushing the interstem or what because so far I've tried all OAB drugs, and flowmax. and he tells me the interstem will help with pain as well. Im sure there are other things left to try before having it done. but Im at a loss on what to ask anymore from him since its been a year since my son was born and still having all these problems. hes also fighting me to take the sp out even though its caused me so much pain and had told me to try the Elavil till monday and if things dont get better I will have to go back to the urethra catheter when I get retention again. I wanted to scream so bad at him today, I was up all night crying in pain I called left a message at his office at 7 crying. and the doctor himself called back guess thats why I couldnt yell at him since he called and not a nurse. I have been looking into other options. but havent found anything yet. the interstem would be a last resort type thing.

      Comment


      • #4
        I would say maybe you need to see another uro and get their opinion. I have read some info about the interstim and all of it says that it does NOT help with pain. If he is telling you that it would help with your pain then I would go running for the hills. I have heard dr's say that it is for things like frequency and urgency and as a positive side effect there might be some pain reduction but that should not be promised.
        You had a hydro/cysto and he still didn't tell you what was wrong. When I woke up from my hydro the uro told me that my bladder looked normal and we had to wait for the biopsy to come in. When he saw the biopsy results that's when he saw I had mast cells which is a sign of IC and that's when he finally told me that I had it. This uro sounds fishy to me.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          I think I would get a second opinion. If this doctor doesn't know what you have after doing a cysto-hydro-biopsy....plus a few other test then its time to go looking elsewhere even if you have to drive an hour from home or work.
          Good Luck.

          Comment


          • #6
            I have to agree that a second opinion is a good idea. And be sure to see a urologist who is not in the same office practice.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            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.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            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.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              I agree, you should get another opinion, but be sure you get copies of all the tests you have had done so you wont have to go through them again.
              I have heard that the interstim can help a great deal with retention, as well as frequency issues, but not so much for the pain. I am so sorry you are dealing with the retention issues, that has got to be awful! Has he taught you how to self catheterize? This way you would not have to have a foley in all the time, which can be very painful as well as cause alot of infections. You could mention to him that you would like to try intermittent self-catheterization. It is suppose to be much safer and there is less of a risk of infections, plus, you dont have to have the cath in there at all times, which can cause alot of pain in itself. I pray that you get some help soon.
              Jen

              Comment


              • #8
                I have tried to self cath and ended up needing to do it over 6 times a day which gave me pain and burning from all the cathing, then went to a foley urethra catheter which was still causing pain. he did say I can hold 350cc in my bladder but even when there is 60 cc inside I feel I need to urinate.and if I try and urinate sometimes I cant go. he did mention some things such as hypersenstivity to pain when my bladder fills and my splinter muscles wont contract when I want them to. which sometimes seems to happen when I am having a bad day with frequency and pain. and over active bladder meds seem to cause worse retention, I have told him I wanted to try dmso treatments or another type of IC treatment but he thinks I dont have IC. since the test really didnt show it since I had a catheter in before I had my hydro distention. I had started taking the Elavil it made me sleep all night and feel really sleepy the next day. I think I will look for another doctor, I already drive an hour and a half to see him.

                Comment


                • #9
                  Did he even recommend you go to a physical therapist to see if you have pelvic floor dysfunction? Do you have the retention everyday, and is it severe?
                  You said it started right after you gave birth to your baby, does your doc think this could have caused it?
                  I still think you should get another opinion. When you get the retention, are you able to pee anything out, or can you not go at all? Also try and keep a diary and see what is happening or going on during the times that you are unable to urinate. for instance,is it around the time you get your period or did you eat something different etc....
                  Hope you get to the bottom of this and get to feeling better real soon.
                  Jen

                  Comment


                  • #10
                    he suggested me to see the physical therapist when I first met him. after I did all these tests he doesnt think I have pelvic floor dysfunction,and said there was no need to see the physical therapist.I have had the retention on and off somedays its better then the others and to some days its severe. last time it was really bad I had 1000ml in my bladder so was told by the ER to keep the foley cath in. and see my doctor in 7 days, I did and he told me to keep the foley in till we did more testing. I told him that it started up after my 2nd c-section he said if anything after the birth of the baby everything should've got better not worse. I can pee very little when I get the retention, and somedays I can empty my bladder with no problems. then the frequency kicks up when I dont have the retention, I would rather live with the frequency then retention thats for sure. it actually usually is right before my period or if I drink caffine or eat chocolate. spicy foods seem to make me urinate more. so ive stayed away from those.

                    thanks Jen I seem to be feeling a little better taking the Elavil. which I was told and have read that is a treatment for IC. so maybe in a way hes treating me for ic but isnt sure whats causing the retention.or is just trying anything to keep me from calling his office crying my head off. lol

                    Comment


                    • #11
                      Wow, I feel so bad for you. I think urinary retention has got to be the worst. I had it a couple times, but that was right after I did a bladder instillation, one of the meds did not agree with me. I had to cath the meds out, but then things got better, so no where as bad as what you are going through. Also, just so that you know, elavil can cause urinary retetion as well, so watch out for that. Also, are you or were you on any other meds that can cause retention?
                      Now, when you say the frequency kicks in when you are not having the retention issues, when you are having the retention issues, do you still have that feeling like you have to pee very bad, but just cant, or do you not even feel full? Like when they cathed out 1000mls at the ER, did you feel like you had that much in you? The only reason I ask that is that this could indicate a nerve problem or something.
                      And your uro does not think you have IC? Do you see a urologist or a urogynecologist? I would suggest trying to see a urogyne if you are not already.They seem to know more about IC than the regular uro's in my opinion. I am glad the elavil is helping you. I hope they can find out what is causing this and be able to treat you. I just cant imagine having to have a cath in all the time. For me I believe this would cause me severe pain. I hope that you can get some help and treatment soon. Hang in there.
                      Jen

                      Comment


                      • #12
                        I was taking Detrol LA for the frequency and Vicoden for pain the first time I had retention. and I had pressure and pain felt like my bladder was going to explode, but had no clue it was 1000ml, I get feelings like I have to pee but just cant start a stream sometimes, or sometimes it just feels like pressure and not even full just pain.he suggested since I had such problems with self cathing to use a foley. which was also causing me constant bladder spasms and pain along with frequent urinary tract infections. I still have the sp catheter in but I have it capped off as my doctor has instructed and am keeping a voiding diary. still getting slight retention but atleast I dont have to cath myself to get it out. I will be seeing him monday and hopefully getting this thing out if he likes the reports of my voiding.he is a urogynecologist and has already ruled out nerve problems as far as his tests go.

                        and thankyou Jen and everyone here for all the support. its been a rough time and its hard to bond with my kids so Im hoping he can figure something to make it easier for all of us!! my husband is going nuts lol.
                        Last edited by Mommyof2; 05-11-2007, 02:59 AM.

                        Comment

                        Working...
                        X