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  • Bladder Necrosis Following Hydrodistention

    While hydrodistention is generally believed to be safe and is often used as a treatment for interstitial cystitis, an article "Bladder Necrosis Following Hydrodistention in Patients with Interstitial Cystitis" released in the January 2007 Journal of Urology describes a rare and devastating complication, an almost total "necrosis" of the bladder wall that occurred in three patients. Necrosis (aka tissue death) occurs when blood supply is insufficient.

    Who? One man and two women between the ages of 29 and 46 had a long history of IC symptoms and had previously experienced hydrodistention with "some therapeutic response."

    How was it discovered? In these incidents, both women reported severe abdominal pain immediately after the procedure. The man reported pain after his foley catheter was removed. The pain was severe requiring narcotic pain medication. Additional examinations revealed debris in the bladder. Surgical exploration discovered that the necrosis had occurred through the full thickness of the bladder wall (sparing the trigone), leaving fragile gray tissue behind. The pathology report suggested that tissue death occurred due to an obstruction or destruction of vessels supplying blood to the tissue.

    How was it treated? For the two patients who underwent surgical exploration, all gray tissue was removed until healthy bleeding tissue was found. Each patient then underwent an augmentation cystoplasty. The man, unfortunately, refused further treatment and was lost to follow up.

    Are complications common? The complications from hydrodistention procedures are poorly documented in the journals. According to this article, the most common are gross hematuria (bleeding) and bladder perforation. The authors state that "Bladder perforation occurs in 2 to 8% of cases and it is more likely to occur with prolonged distention and/or after biopsies." This article is the first case report of almost total bladder necrosis though one additional article revealed a case where a small area of necrosis was found after hydrodistention.

    Why did it occur?? The authors report that necrosis is an unsual and rare complication and that the cause is "unknown." They suggest that the hydrodistention may have obstructed blood flow in local blood vessels of the bladder. Apparently some animal studies have shown that blood flow can decrease depending upon the volume of water used in the procedure and pressure that occurs. The authors further note that two of patients also had a chlorpactin instillation which may have contributed.

    Conclusion: IC patients are often frightened by the concept of having a hydrodistention. Luckily, a hydrodistention is now less frequently used to diagnose IC/PBS in favor of other less traumatic methods such as the PUF questionnaire. But it does have an important use. A hydrodistention is required if a physician would like to conduct a biopsy. Hydrodistention clearly has some risks. At a minimum, this article suggests that combining a chlorpactin treatment with a hydrodistention, especially if the bladder has sustained any injuries during the procedure, may be unwise. The use of higher volumes and pressures during the procedure may also be a risk factor.

    Dr. Deborah Lightner of the Mayo Clinic provided an official editorial comment from the Journal of Urology at the end of the article that captures our viewpoint as well. She says "Given the lack of placebo controlled trials of cystodistention or of chlorpactin for PBS, it behooves the surgeon to first do no harm." She and the authors reiterate that distention is no longer diagnostic for IC/PBS and is rarely therapeutic in the long run. Makes sense to us!

    Source: Zabihi, N. et al. Bladder Necrosis Following Hydrodistention in Patients With Interstitial Cystitis, Jurol, Vol. 177, 149-152, January 2007
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  • #2
    I wonder if it makes a different on the severity of the bladder. I wonder if doctors that aren't really capable to do this hydrodistention are doing it instead of professional surgeon who knows exactly what to do and when to stop. Like these instillation where doctors was over doing the amount and causing more harm. No wonder people are getting afraid and also doctors too and trying the easy stuff first. I am glad I said NO to some things when I felt it in my heart because I found out it would do more harm then good.

    But I also think sometimes you have to take a chance because there is nothing more you can do.

    I am glad that everyone is being more cautious about doing different things, but sometimes you are afraid to do anything. I think that is where the doctor and you need to commuicate well, and also the doctors will listen to what is being said when you speak.

    Thank you Jill,
    Sending hugs, Trishann

    Comment


    • #3
      I take it Clorpactin is a treatment? i've never used it, to my knowledge...I have installations, that I've stopped, because they always send me into a raging flare. Don't know why...simple meds...steroid, heparin, and marcaine ''shrug''. Anyway...as far as diagnostic, I agree alot of people likely don't need need the distention. But had they gone with just a quick in office sneak a peek into the bladder,They would not have seen much at that time. A few glomurations, but not diagnosabable. they got my waking bladder hold (a little over 100ccs). WhenI was knocked out, they couldonly fill to 450 ccs, got a little blood, again glomurations. When I awoke the doc told me this, but being conservative said he didn't think so. However, the Biopsy was off the charts for Mast cells so he had to call me back at the end of the week and hem and haw before he said I haid it. SO...I think the distention, as much fun as it , is a necessary evil. But, I'm just me. : )

      Thanks for the report, it was interesting

      Tracey
      I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

      Medications I CURRENTLY take:
      90 mgs Ms contin (45 mgs Am/PM)
      Percocet as needed
      Topomax 100mg day
      Ambien 10 mg bed
      desipramine 25 mgs




      If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
      Albert Einstein

      Comment


      • #4
        I dunno, I really think the clorpactin instill might be the culprit here. I didn't even know they did those anymore. I thought they were found to be very painful, and also real hard on the bladder, kinda like that silver nitrate stuff. It seems like whenever they try to hurt the bladder to get it to heal itself, like they did with that modified tuberculosis instill, it doesn't end up working for most people. What ends up working are the soothing instills like heparin.

        You know, I have heard some weird stories about cysto+hydro procedures in the past. I remember hearing once that, if the uro puts too much in, the bladder will explode. I guess I have a hard time believing stories like that, though. I never talked to anyone on the boards that experienced anything like that. Then I can't help thinking of all the people like Donna, who have had cysto+hydros done on a regular basis over an extended period of time, and have never had any issues with necrosis.

        It is important, though, to keep in mind that all surgical procedures do involve an amount of risk. Some people don't really think of a cysto+hydro as "surgery", because it's such a quick procedure that usually doesn't involve any incisions... but it is still surgery. So, thank you for posting a word of caution. Hopefully, this will motivate people to seek an open discussion with their doctors about the risks of these procedures, even if they are considered only "minor".

        Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
        Current IC treatments: menstrual suppression
        Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
        As-needed treatments for other conditions: Klonopin, Ambien

        Comment


        • #5
          I agree that complications are rare from a hydro/cysto, but I just happen to be one of those rare cases, After the proceedure was done I was in SEVERE pain. The pain meds they gave me didnt even touch it. I went back to the hospital that night and they did and x-ray and found that my bladder had tore and was leaking. The URO said it was because my bladder had a weak spot.. Well that theory is under investagation right now..Question is ...Was it a weak spot or did URO punture it while taking the biopsy?

          Thank God it healed, but now I am more pain than I ever was before.....
          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


          • #6
            Oh wow, Ronda! I'm so sorry you had to go through that

            Usually, when I hear about complications, they tend to be stuff like bleeding over an extended period of time, or severe pain after treatment. But they usually go away after a few weeks, and no permanent harm seems to have occurred.

            Well, I guess I do know someone who had very serious complications now!

            Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
            Current IC treatments: menstrual suppression
            Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
            As-needed treatments for other conditions: Klonopin, Ambien

            Comment


            • #7
              Yup... that would be me.. I am just glad my hubby made me go back to the ER that night, because if I hadnt theres no telling what would have happened, esp with my bladder leaking into my body...
              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


              • #8
                Wow, that is really scary. I am soooooooo glad I refused to do the hyrodistention. I am sorry, but it cannot be good to blow up the bladder beyond it's holding capacity(not even in a healthy person without IC). This is just not natural!! Of course you bladder is going to bleed, heck anyones would after being strecthed beyond it's normal state.

                I dont who invented this test. The first urogyne I saw back in December wanted me to do the hydrodistention, and at first I said ok. Well, I set up the date to do it a week later. I went home and started researching this test and I called him back and said forget it that I was not doing the hydro, that he could do just a cystoscopy to make sure there was nothing else going on. When he did the cystoscopy, he said my bladder was extremely inflammed and vascular which is consistent with IC he said. So I guess I did not even really need a hyrdo to Dx it.

                Now the urogyne I see now, she mentioned that I should have the hydrodistention, but hubby and I were adamant and said no that it is not a safe test to do in my opinion. She did not agree with me, but I just said that my gut instinct tells me I should not do it. She let it drop after that. I mean if it helps some people, that is great and I am happy. Like with any test, things can always go wrong. I guess it is up to us individually to see how we feel and if we think we could handle such a test. I personally did not feel that my body would be able to handle that. I already have a high pain level. I was positive that if I had the hydro done, my pain level would have been off the wall. That is just me though.
                Jen

                Comment


                • #9
                  Hydrodistention vs. Cystoscopy

                  Hello, I am new to this forum and I'd like to get some answers about the hydrodistention. I totally agree that hydrodistention sounds like a barbaric and dangerous thing to do to a woman's bladder and it cannot be a good thing. I have had a cystoscopy in the office to rule out cancer or ulcers, not necessarily to rule in IC. I'm certain I do have IC, but, my new doctor wants to do a hydrodistention to prove it. AKA, I don't think anyone I've been to believes the pain I have is real. I do not want to go through that. I started with IC after I had a uterine ablation two years ago. I woke up in horrible pain and it has continued throughout the two years, sometimes less than other times. Beleive me, I have regretted that decision every day since. I have had bladder instillations, which helped once for almost seven months, but, didn't help the second time. I have been on Elmiron for four months, Ultracet for pain, Elavil for pain, Singular (mainly for my asthma), and now I'm supposed to be starting Hydroxyzine for who knows what. At any rate, what possible good would it do to get a Hydrodistention, when, if they decide it is IC, they will still just give me the same drugs they are now?

                  Comment


                  • #10
                    Your right why get it done if they are just going to give you same meds..
                    I wish I would have never had it done.. I wish I would have went with my gut feelings, I even went and got a second opinion and was told it was a very safe proceedure.

                    Now dont get me wrong, just because I feel it was a bad choice for me, amny other people says they have been a life saivor for them.. I guess thats because we are all differant..Good luck and God Bless
                    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
                      hydrodistention

                      Thank you for your reply. I'm going to phone the doctor tomorrow to tell her I'm not going to have it done. I'm just dreading the confrontation. I've done a ton of research on this disease and the "discomfort" I have and really there is nothing else that could cause this besides IC and cancer. I've had every test imaginable, including CT Scans....colonscopy...ultrasounds, etc. There's nothing there, just constant burning.

                      Comment


                      • #12
                        Very interesting and terrible (in the case of Ronda ) things to think about. My uro (I had at the time) when I watched him do the inoffice distention, as soon as the water going into my bladder went from a steady stream to a dribble he stopped it. I was starting to feel pretty uncomfortable but he got the reading. When I was under, as soon as the dribble became drops he immediately stopped. (I am hoping, at least that was what I was told..) when the water came out, he could see the "terminal pinking"...(as I said, he really didn't like to "pin this awful disease" on anyone so he was playing conservative) From where he could see the bladder irritated, he took biopsys. (ouch) But he told me in the hospital he didn't think I had it. I'm just trying to figure out how he would have gotten it would it not have been for the distention, and I do know some people have had relief from distention. (I for one would not want to undergo that again...but I do think I was cared for, but what do I know, I was unconscious!!!) That uro did refer me to a very good female urologist who has become my buddy, although we disagree on some aspects of treatment. (The fact that she let's me disagree without getting her panties in a wad has made me respect her 100% more)
                        Anyway, do what feels right to you. I know for me, I had to do all the hoop jumping because I had to keep all my disability beni's; (from work, then to apply for social security) You certainly have to have trust in your doctor for this kinda stuff. So many uro's are such .....MEN. I've seen about 5 and most spoke down to me like I was an idiot except for the one who did my distention and the one who is my current doc.
                        You don't have to do anything you aren't comfortable with!!!
                        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                        Medications I CURRENTLY take:
                        90 mgs Ms contin (45 mgs Am/PM)
                        Percocet as needed
                        Topomax 100mg day
                        Ambien 10 mg bed
                        desipramine 25 mgs




                        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                        Albert Einstein

                        Comment


                        • #13
                          The other side of the coin

                          I can't imagine what my life would have been like over the past 32 years without hydrodistentions. I had number 40 in February 2006. I absolutely know there is some risk --- there's risk with any surgical procedure --- but when I get relief for as much as a year or more from having it done, I will go for it. The pain can get pretty awful before a hydro and I seem to always put it off as long as I can, but the relief, for me, is worth the risk.

                          It's a decision each of us has to make and I think it's important to know the risks so we can balance the potential for benefit against those risks when we are deciding.

                          Donna
                          Stay safe


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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.
                          [3MG]

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

                          Comment


                          • #14
                            I am so sorry to hear of the pain people have gone through due to hydrodistion. I am much like Donna and found it was the only relief I was able to get. I went from a 10 in pain down to a 2 and have stayed that way so far since July 06. A GYN did the hydro and did a great job. My Family DR. sent me to a Urologist who put me on elmiron. He said he would also do another hydro if I needed it. Now I am wondering , after reading the horror stories here, is when I need another hydro, maybe I should go back to the GYN who did it in the first place. He is very busy delivering babies, he sure does not need my business but I think I need him. I don't even know if he would take me back. I guess the Dr. doing the hydro is what seems to be most important in getting it done right. Ziggy

                            Comment


                            • #15
                              I am like Donna as well - hydros have been part of my treatment in the last 15 years (I have had 11 of them) and I can't imagine my life without them. In my opinion the fact that they put Chloropactin into a bladder that has been distended is barbaric - why would you instill anything into a bladder that has been distended?

                              Comment

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