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  • Home from Hydro

    Hi everybody,
    I'm back from my hydro and resting at home. Well I guess the procedure itself went okay, I woke up and was burning pretty bad but nothing that was too bad, I was worried that it would be much worse.
    I'm really upset though because Dr. B told me that my bladder looked totally normal. I basically started crying the instant that he told me that. I asked him if it was possible for the hydro to look normal but for the bladder biopsy to come back showing IC and he said it's possible but more uncommon. I am so upset!! I have all the symptoms of IC and I thought I was finally going to have my positive diagnois and then I would be able to get better treatment and here he says it looks normal!! Please if there is anyone out there who has had a normal looking hydro and then the biopsy came back as showing IC I would really appreciate hearing about it. He didn't give my hubby any idea what else could be causing all of my problems. He told me to see him in the office in 2 weeks. I am at a total loss and feel so depressed. You think I would be happy that it looks fine, but if it looks fine why do I pee 40+ times a day and have all this bladder pain!!! Ugh!!!
    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

  • #2
    That happened to me. My bladder looks great but biopsy said inflamation so you are not alone on this. Is he saying you do not have IC? I am glad the hydro went well and you are not in too much pain. Rest for a while and take it easy. I think some doctors need to explain things to patients better then to leave them hanging crying.

    Comment


    • #3
      One thing my Uro told me over and over was that the IC is inside the bladder wall. I kept asking him how can the bladder look great and still have so much pain?

      Comment


      • #4
        ((((((((((((((((hugs))))))))))))))))))
        I am so sorry that you didn't get an answer today.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          I know it's possible to have a normal appearing bladder and still have IC. Hopefully you'll hear from some who have had the same experience as yours.

          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


          • #6
            To just know... whats up.. would be nice!

            Hello there! I read your post and feel your pain so much because I was in the same place for over 10 years! It is sooo depressing to go from doctor to doctor, hoping to find critical answers, only to wind up even more confused than when you first began. This is the unfortunate draw backs of our current medical system. You'd think that with all we know, all we have learned, that we would be able to put all the pieces together and come up with a logical conclusion in a reasonable amount of time! But nooo!! O.K. enough with my complaining! About getting you answers!
            1. For the longest time, though I was finally diagnosed with I.C. I had NO idea my problem was with my bladder! AT ALL! Not even after peeing 80 times a day! I actually was inclined to believe from the pain, that it was a gyno problem or ... problems with the kidneys. When I was told I have I.C. I was so reluctant to believe it after all those years, that the first question I asked the poor doctor was "So you.. are.. SURE my kidneys are fine?" That really is the tricky part about pain. When we feel it in specific areas, we only know what is going on based on our own reference as to "where it hurts and that it hurts on a scale from 1-10". This is the very reason it is far too easy to be personally unaware as to what the heck is going on, and where exactly! Because we just know it does! We both desire and deserve rational answers during this process of elimination.
            2. Therefore, please do not be upset for making a rationalized personal inquisition as to rule out, or rule in a condition such as I.C.
            3. Now the next step, is the hardest of all. Go figure. Process of deduction and elimination. The process you are dealing with right now. What doctor's have you seen? Were they specialists in the field? What were their findings, if any? Did they, most importantly, take you seriously?! What testing have you had done, procedure's etc. Second Opinions, third the works! (Best to do when all is ruled out, and you really think you need another opinion, so as to not waste your time) You get the hint I am sure. Perhaps, could it be a urinary problem that isn't I.C?
            4. Don't feel too discouraged, especially during this recovery period before you actually get to speak with the doctor while not heavily sedated. For example, when I woke up my mom said the doctor said that everything looks really good, but that I do have I.C. I sat there for the longest time, completely unsure of what to do next, and what really was going on, until the follow up app. with the Doc. When I met with her two weeks later, she gave me much more detail and helped to relieve my utter confusion. It was then I found out I was having an unknown allergic reaction to some substance that was irritating my bladder in addition to the I.C. Now, this information was not available to her until the biopsy results came in. Then of course she went into more specific detail so I could understand, why I have I.C. but yet, still have little visible damage to the actual bladder. So please, do not feel the procedure was not worthwhile. Because at the very least, you've ruled out something! Feel better for now, and write those questions down for the Doctor to hear in two weeks!!!
            4. From your history, and the similarities of I.C. and other conditions we must ponder, what else could it be? Is it something you already know about that has gotten worse such as the endo? Or is it perhaps something similiar symptomatically such as a problem with (the kidneys, another gyno problem, thyroid etc.)?
            5. PLEASE, WHATEVER YOU DO, DONT GIVE UP! RESEARCH! RESEARCH! YOU ARE THAT MUCH CLOSER TO FINDING THE ANSWERS YOU SO DESPERATELY DESERVE!!
            6. KEEP A WALKING RECORD WITH YOU, COMPLETELY DETAILED REGARDING YOUR ENTIRE HISTORY WITH THESE SYMPTOMS/DIAGNOSIS/ETC. FOR IT IS ONLY THROUGH THIS CONTINUOUS ACTIVE COMMUNICATION AND THE COMPLICATED PROCESS LISTED ABOVE, AS WELL OF COURSE, A GOOD DOCTOR.. THAT WE HAVE EVEN THE SLIGHTEST BIT OF HOPE IN FINDING ACTUAL MEDICAL ANSWERS FOR THESE COMPLICATIONS THAT ARE OH, SO PAINFUL, AND OH SO REAL TO OURSELVES.
            I KNOW THIS IS LONG, BUT i CAN'T HELP MYSELF. PLEASE HAVE A SPEEDY RECOVERY, AND INDEED KEEP ME POSTED AS TO HOW YOU ARE DOING! YOU ARE IN MY THOUGHTS, MY PRAYERS, AND I HAVE ALL THE FAITH IN THE WORLD THAT VERY SOON, YOU WILL FIND THE ANSWERS YOU SO DESPERATELY SEEK. PEACE LOVE UNITY RESPECT.... FOR ALL FOREVER
            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

            Comment


            • #7
              Thanks everyone for the replies. I am still so confused. I thought for sure that I would wake up and I would hear if I had mild, moderate or severe IC and I wake up and here I have a "normal" bladder. It sure as heck doesn't feel normal to me!! I can't believe that I hope the biopsy will show something but at least that will mean I'm not crazy. I'm even more confused though because when he did the in office cystoscopy about a month ago he said he saw areas of chronic inflammation, how could he see that then and say it looks normal from the hydro. He gave me pictures because I requested them and I saw a red spot in the middle of one of the pictures, which seemed odd to me for a normal bladder but then again I'm not a uro so what do I know.
              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


              • #8
                Ok, now I am confused. I have had 3 hydros and my Uro saw nothing. Just had another cysto in his office and still nothing was seen. How can he say your bladder is fine if you have red spots with inflamation?? Did he say anything about that when you had the cysto?

                Comment


                • #9
                  Well, when I saw Dr. Phillip Hanno at the University of Penn Medical Center in Philadelphia last month, he told me that you CAN have a normal looking bladder and still have IC. In fact, he told me that he diagnoses his patients on SYMPTOMS, because the cysto/hydro doesn't always show anything. And he is supposedly one of the best doctors in the country for IC, has written books on it, and is currently conducting the Elavil clinical trials at the University of Penn.

                  Comment


                  • #10
                    Christine (((((((((((hugs)))))))))))) I just read your post.. Well for starters I am glad your hydro/cysto went ok and I am glad you are not suffering really bad..
                    When you are up to it you should go to his office and request to see your pictures of your bladder.. Also there should be some kind of report on what he saw and how far he extended your bladder..
                    This will give you a chance to compare your pictures with others here on the ICN...Like you said something has to be wrong... Its just not normal to pee all day long and have pain, unless somethings wrong..I wish I had the answers for you, but I do know if your not happy with his results you can always get a second opinion If you need me PM me and I will give you my number...
                    Hugs
                    Ronda

                    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:
                    http://www.ic-network.com/handbook/

                    Diet Reference Sheet:
                    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                    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.

                    Comment


                    • #11
                      Christine -- My doctor doesn't think the cysto/hydo is the "gold standard" anymore, and he has shown me a lot of literature about this trend. He doesn't do them at all, so I've never had one. He uses PUF test, and if that is borderline, then maybe Potassium Sensitivity. And, maybe I can't keep everyone straight, but I thought you already had been diagnosed by one of those methods?

                      I think you should ask for the report and pictures, and I also think you should consider trying to find a different uro, since this one does not appear to communicate very well.

                      Good luck.
                      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                      Wishing you happiness and good health, and all the best out of life.

                      Peace, Carolyn
                      ___________________________________________________

                      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                      On the Beach with IC

                      Comment


                      • #12
                        Oh thanks so much Ronda! (((((hugs)))) I asked the nurses if he usually took pictures and they said no but I told them that I would like pictures which they told him because they were in my chart when I woke up. They gave them to me to bring home, I think they're in the laptop bag. I haven't compared them with the pictures here yet but it didn't look as bad. I think the red spot in the one picture surprised me since he said it looked normal and that didn't look normal to me. I guess I'll just wait and see what the biospy shows. He didn't really say that I didn't have IC he just said that my bladder looked normal. I def feel like I'm losing it, that's for sure, I doln't know what I would do w/o the support here, I'd be even more of a basket case than I already am.
                        Yea Carolyn I had the PST done by my gyn but they really didn't do much for me after that except hand me a script for Elmiron and tell me to start the IC diet that was pretty much it. He's been good to me so far so I'm going to give him the benefit of the doubt and see what the biopsy shows and what he says when I go back in two weeks and go from there.
                        Last edited by GriffsMommy; 04-04-2007, 03:25 PM. Reason: added more
                        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


                        • #13
                          Hi Christine!
                          I've been following your posts so I'm surprised as well your hydro showed a "healthy" bladder. I agree with what everyone else said though......my doctor doesn't even do it, he diagnoses by collective symptoms and ruling out any other problem. I've had c-scans, ultrasounds etc...to rule out everything else. My symptoms that are left = IC.

                          Will he continue to treat you for IC? Is it possible at all that the Elmiron is actually helping you making your bladder "look" normal? Have you gone for rescue instillations?

                          You'll be okay. We'll all help you figure this out. If he drops the ball though you WILL need a NEW doctor. Don't let yourself be dismissed.

                          Comment


                          • #14
                            How long have you been taking the Elmiron?

                            I agree with the above poster that maybe it is doing what it is designed to do, coat the bladder wall and help it heal, and in your case , maybe make it look ok on the pictures. Just a thought.


                            Also, when i had my cysto/hydro done they found that my bladder neck was very infamed(i think its called the trigon area) I belive this is what was causing my frequency. maybe, you have something like this too.


                            Im glad that you got pics of your bladder. I hope your dr has some answers for you , if he doesnt feel that this is IC.

                            hang in there


                            Lyme disease diagnosed 11/05
                            vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
                            IC diagnosed with hydro/cysto- may 17, 2006

                            Over growth of lactobicilli found 8/07 treating with doxy.

                            Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

                            8/22/07- was able to get my first speculum exam, with pap

                            Strep D found in bladder with United medical labs May 2006
                            2 strains of strep in stool culture 9/06
                            high Strep ASO titre found 10/06

                            NEW MED

                            Capsasin cream-once a day for 20min,
                            BUt wont lie it does burn

                            About to start valium supositories for PFD

                            Trigger point injections- oct 07

                            Current meds:
                            Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
                            Zanaflex 2mg
                            IC and low oxalate diet, no sugar diet
                            Xanax for appointments to help relax me since they cause so much pain

                            Started PT 3/07, PT has really helped me in ways I never knew that it would

                            Meds ive tried
                            Lyrica
                            Klonopin
                            Singulair
                            Claritin
                            Pyridium
                            Soma- can barely tolerate half a pill
                            Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
                            Estradiol cream
                            Urelle- caused worse bladder spasm and retention

                            Various antibiotics for lyme which caused yeast and made the IC and VV worse

                            waiting for the next chronic illness to pop up


                            "Did you know?
                            Every 15 seconds,
                            a person is
                            diagnosed with
                            interstitial cystitis."
                            Source: J. Dimitrakov, MD

                            Comment


                            • #15
                              No, I didn't know that...where are all of these people? They say there are only about 700,000 people with IC in the US, but hopefully it will get more attention, and I believe there are a LOT more people than that...

                              Comment

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