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  • #61
    Hello everyone!

    I had a CMG (under light sedation because I'm such a wimp) then my Urologist did a cysto/hydro. Everything is perfectly normal...no signs of IC or PFD. He did send a clean urine sample out to be cultured. When I go back to see him we'll discuss doing a low dose, long term antibiotic.

    I was amazed at how little pain I had from the tests. I did feel a little crampy with pelvic/lower back pain but a Tylenol kept that in check. I really am glad I went through with the tests. I know they're not 100% accurate but I wasn't entirely convinced I had IC, the tests confirmed what I already suspected.

    Take care..
    Diana

    Comment


    • #62
      I am glad I had the hydro because I needed it to confirm my IC and the pain I was feeling. I woke up having to pee super bad and it was like razor blades that first day everytime I urinated. After that the pain was no worse than any other day. I think as long as you are prepared to have some discomfort that it is not as bad. I had an in-office PST that was way more uncomfortable probably due to my tensing up so bad from the pain. I was also very scared of a hydro after what I'd read on these boards. The thing is I had no idea I was even getting a hydrodistention. I thought it was only a cystoscopy before I went under. If I had known I probably would have told my dr not to do it but I am glad that it's done now.
      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

      Comment


      • #63
        Originally posted by Charisse View Post
        The thing is I had no idea I was even getting a hydrodistention. I thought it was only a cystoscopy before I went under. If I had known I probably would have told my dr not to do it but I am glad that it's done now.
        I did not now either that I was getting a Hydro. but I will own the mans house someday!

        Comment


        • #64
          My Hydro

          I had the Hydro Aug. 14, 2007 and it seemed to have cause more symptoms than before. Immediately after for about 3 weeks, i was going to the bathroom about 50 times a day and 15-20 times at night with pain every time i urinated as appose to before the surgery it wasn't even half of that and i had no pain. It's now been two months and the frequency has down gone to where i was before the hydro but i now have the symptom of pain everytime i go to the restroom. I've talked to my physical therapist for PFD and she was really surprised that i now have pain, because so many of her patience have had really good results or no difference from it.

          "Harmony"
          Last edited by HLB01; 10-27-2007, 08:28 PM. Reason: add name

          Comment


          • #65
            Me and HYdro's

            I have gone through so many life changing things from "surgery" as this procedure is called.
            At first I was upset at me for being "a dummy" about not knowing anything and letting him do anything to me, but you know through all this I have learned that it is not my fault. It is his, the doctors fault! He is the professional, not me.
            I went in there looking for help. I only new what a Cysto was the day before in talking to a regular person, not a professional and never heard of the word HYDro before in my life. Never would have a dreamed that he would have done a Dilation. I just went in there as a regular person looking to find out why I had hematuria and white cells in my pee all time.
            I feel now that I dont know if the procedure would have worked for me.
            Maybe it would have if it would have been done like ALL the URO sites say, "under anesthesia".
            I went through a Dilation procedure, cysto and Hydro with absolutly nothing for pain.
            My life is turned upside down, not to mention me never going to allow a nother doctor to touch me again!
            I tryed yesterday after waking up sort of pain free that maybe I could go to the park with my children. well we did, but I can't play basketball and badmitten was brief for me.
            I am up all night going to the bathroom. I can't bend without pain and I have nightmares about him doing this to me.
            My Grandchildren can even sit in my lap because my bladder hurts.
            I am one ****** off person.
            I could live with it all before. I lost two jobs as a result.
            Yes it was horrible, I felt several times a year that I had a UTI, but now. it is every day , every day and everything is different, not to mention that my alreay falled bladder is now way down.
            Yes we as patients need to educate ourselves but you know when we go to a doctor we just assume that they know best. At least I did. NO MOrE!
            I trust them little now.
            It is such a shame.
            Maybe I could have really benifited from this. Maybe it could have helped me. Then or in the future.
            Now I just live for the day that he needs to go to a URO himself!

            Comment


            • #66
              Sorry

              Hi everyone,
              I just wanted to say that I am sorry for being negitive.
              Nicknamed most my life for those who know me well. "bubbly Brandi"
              I am upset at myself that "this thing" is getting me.

              Believe me I am trying.
              I am just in some pain this morning, but I am learning to deal with pain.
              I wish I could benifit from something.
              Please except my appology.

              Comment


              • #67
                Tracey,
                It's ok to vent.. We all have our moments..I know I do..lol

                Alot of us have had neg results from the hydro that is why I started this thread, BUT as you can also see, Some people have postive results from it..I guess that is with any kind of surgery. I was like you. I did not know anything about the surgery before I had it done. And I had only known my Dr for about a month. Not good judgement on my part. Like I said I should of did my homework.. Because there is good Drs out there that know what they are doing and have success from the proceedure. I just happen to be one that did not..
                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


                • #68
                  Tracyscherer,

                  I am sorry this has happened to you. It sounds awful. Is there another uro in your area you can go see? As far as my hydro/cysto goes I did have anesthesia. There is no excuss for what your doctor did. I voted on here as if it was a negative becasue it made me worse at first for over two months. BUT, as I get better I am happy I had it done so now I know for sure I have IC. I hope and believe you will get better in a few months too.
                  Daily Meds:

                  IC-Meds
                  Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.

                  Other Meds
                  Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)

                  With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).

                  Comment


                  • #69
                    Thank you for your kind words

                    I feel a little better than earlier. Thank you bladder! LOL
                    Water, water, pain meds, more water, LOL
                    not really funny, but you all know,, whatever it takes huh?

                    There is a URO in the next largest town. I had an appointment last week, but I was so upset about going that I cryed on and off the day before trying to gather my gutts up to go. but I could not.
                    The thought kept intering my mind that he is going to need to touch me in someway to find out what is going on for himself and I just can't do that right now. I don't know if I ever can. It has been months and I am not better, I am worse!
                    I filled out the pain questionair after he was done with the surgery, not before (did not know this is something that belongs at the beginning of everything for a doctor to diagnose IC) anyways I fill that paper out now!OMG.
                    I never had urgency or frequentcy, but blood in my urine and white cells. About every 3-4 months. I had burning at the end of peeing really bad when I had UTI's and thought that is what it was, the pee tests said it was when sent to the lab most the times. Then it changed, I felt like I had to poop and pee when I got a UTI. I had diareaha and pain too. It seemed like it changed and every time I had I UTI my bowels were involved. That was for months.
                    I had one test come back with Citrobactor frunilli [sp]
                    I was on and off antibiotics for almost a year.


                    I would get a UTI confirmed by tests. Then it never seemed to go really away but when my doctor would send things to the lab, it would come back UTI. So finally she sends me to the URO by me begging for a referal for about 4 months.
                    In the mean time I have had every test you can emagin in the way of pictures, ultra sound wise. Nothing, everything okay.

                    Keep in mind back then, I don't even know what the word Cysto really is. This is my first appointment with a URO.I thought I was there for just a look see, not surgery and he never explained to me that this was surgery, never said anything about the risks , benifits , other ways, anything about it takes years to dianose IC. Imean I have learned all this here and IC org. or what have you.

                    anyways hope all this makes sense.

                    Comment


                    • #70
                      Here is my oppinion. It is just that an oppinion. Well, he does not sound good at all. You should not of had that proceedure the very first visit at all. Atleast, he should of given you the option to schedual it. Then you could of researched it. How many months has it been? Is it getting any better at all, even a little bit? Go to that other Uro. Just do it. Fight for yourself even against yourself. Please go.

                      Tell him you just want to talk on the first visit and politly insist on it when you are there. Explain what happened at the other office and he/she will unterstand that you need to take this very slow. Do not focus to much negativity on the first uro when you are talking to the second one. Who knows what their relationship is. But do fully explain and say how it has left you. Make a second appointment when you are there for an exam if he feels he needs one.

                      Before hand, go to the first office and nicely ask for a copy of your file. Look at it. Take it to the new doctor. Get a copy of all the paper work from your FP doctor that is about your bladder. I am can tell you are having a really hard time. I am sure something is wrong, but I am conserned about the IC dx from the first uro if your UTI cultures are all showing up with bacteria. Are they? Did I read that right. If so ask the second uro about that.

                      Please, go to the second uro. I think it is important to keep fighting. I know the first doctor did you wrong, but the doctors are our only hope. You need a doctor to give you the tools to get your life back. Let us know.
                      Last edited by Sally939; 10-28-2007, 02:23 PM.
                      Daily Meds:

                      IC-Meds
                      Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.

                      Other Meds
                      Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)

                      With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).

                      Comment


                      • #71
                        I agree with Curl

                        You have to keep fighting, My first URO really messed me up to. I will not go into detail, but I know that is why my bladder was in such bad shap is because of my first URO..
                        BUT I finally went to my new URO that my GYN reffered me to and I trust her dearly.. And it was the beast thing I have ever done..Since I have been seeing my new URO I have been doing so much better and really feel like I am getting my IC under control..
                        Never give up!!! ((((((((((hugs)))))))))))
                        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


                        • #72
                          My experience with hydrodistention

                          I had my cystoscopy with hydrodistention under general anesthesia 6 days ago. Immediately after the procedure I had a very intense urge to urinate. I was given a bedpan but I was unable to void. I don’t think I actually had anything in my bladder. Rather, I was feeling pain from the procedure. I was offered two pain medicines. One was morphine, which I declined. I don’t know the name of the other medicine but I accepted it and they shot a dose into my IV. It took about 10 minutes to take effect and the pain relief was significant. I was required to pee as a condition of my release. When I urinated it was painful, but not excruciating. It had been a while since I got the shot of pain medicine, but it may have still been in effect. When I was being discharged from the hospital I was given two prescriptions: one for Tylenol with codeine and one for phenazopyridine. I took the phenazopyridine, but did not take the codeine. I didn’t feel the degree of pain required codeine and it makes me very tired. I got the prescription filled in case I woke up with agonizing pain in the middle of the night. I was very glad my doctor and the medical staff recognized and addressed my pain.

                          Here is a note for those who are not familiar with hospital routines, as I am not. Once you are in a hospital gown and beginning your adventure, be sure to empty your bladder whenever you have the opportunity. I was in a kind of holding room while being admitted and I had full and easy access to a bathroom. I overheard a nurse talking to another patient. She said once you go to the pre-op room it won’t be as convenient to use the bathroom. She gave good advice. I was in the pre-op room, which did not have a bathroom, with an IV hooked up and was lying in bed pretty much on my own for at least 3 hours.

                          I stayed home from work the following day. I was very exhausted and slept on and off throughout the day. My level of fatigue surprised me. I don’t know if it was from the hydrodistention or the anesthesia or both. (Luckily, the last time I was under general anesthesia was 40 years ago when I was a child.) My urogynecologist had said I could not drive for 24 hours after being under general anesthesia, so I knew to schedule the next day off from work. I returned to work less than 48 hours after the procedure. I have an office job (no physical exertion) so I was able to get through the day.

                          My painful bladder syndrome symptoms are definitely worse now. I am experiencing almost constant burning and I almost always feel a need to urinate. My hope is that the intensified symptoms will return to pre-procedure levels 2 - 3 weeks from now. But I am concerned that my symptoms may be worse permanently. I know some people find relief from hydrodistention, but I am not optimistic. I want to be sure though of the mid-term effects of the procedure so I can properly gauge future treatments. If I start a new treatment regime 5 weeks from now and feel better, is this because of the new regime or is it a result of the hydrodistention? I will wait a few weeks before I pursue changes in my treatment.

                          I want to relate one part of the hydrodistention that may be a concern for some. In addition to painful bladder syndrome, I dribble urine. Because of this and my previous experience with hydrodistention, I was very worried that I would be completely incontinent for at least a half hour after my procedure. About 7 years ago, I had an in-office cystoscopy with hydrodistention with no anesthesia. It was a terrible experience. During the ride home, I urinated in my pants uncontrollably. Fortunately, I had an undergarment pad on and it absorbed the urine. That past experience caused me to be very concerned that I would have a similar or worse reaction to this hydrodistention. Just before I was brought to the operating room, I told my urogynecologist I was concerned about being incontinent after the procedure and she did not think it would be a problem. She was right, thank goodness. When I was offered a bedpan after the procedure, I accepted partly because I wanted something under me in case I was incontinent. Of course, everyone’s experience is unique but I wanted to share this.

                          I am not regretful that I had the procedure because I wanted cancer to be ruled out. Also, I wanted to know, and I wanted my urogynecologist to know, the condition of my bladder. I voted “negative” in the poll because my PBS symptoms are worse now.

                          Comment


                          • #73
                            Hi,
                            A recent post brought back this post that you made a year and a half ago. The poster is wanting to hear things that went wrong with cysto w/ hydrodistension. I recently had a complication that was life threatening from it last August and would not want to share that with her even though she's asking. I was wondering if you were open to discussing this issue with me over private message. I don't want to take you somewhere you don't want to be right now. But let me know and I'll share my experience - I'm doing well now and getting curious about whether it has happened to anyone else. I did write Donna privately and she had not heard of it but had heard of a few people whose bladders had been perforated - that's not what happened to me.
                            Again please don't even respond if this feels like an intrusion,
                            CS

                            Originally posted by Ginny View Post
                            I had a very negative experience right after the hydro and personnally would never have another one. My doctor agrees that I should not have another one. I will not go into detail because I do not want to scare anyone that needs to have it.

                            Having said that I think the hydro is necessary to get a diagnosis but I do not feel it should be repeated. I know Donna has been helped by that but having had such a bad experience I do not agree with this form of therapy.

                            Ginny

                            Comment


                            • #74
                              After being in a pain hell since December 15th I had a HYRDO done last Wednesday. I had a couple days of feeling ill. Yesterday I was able to get out of the house and do some shopping. NO PAIN. It has worked for me. I asked the Doctor to please not put chemicals in my bladder. I also asked for 3 days of pain pills just in case I was hurting. I believe which Doctor one uses makes a big difference. My last HYDRO was two and a half years ago. I have no idea why a HYDRO works for some but not others. It sure feels wonderful to be pain free again. Blessings to all. Hug, Ziggy

                              Comment


                              • #75
                                poll is a little confusing

                                i thought you meant were the results negative or positive, i think a lot of people might misunderstand so thats the way i voted...sorry!
                                DIAGNOSED 12/2008
                                AGE: 29 female

                                CURRENT CONDITIONS:


                                1. THROMBOPHILIA
                                2. CLASSIC IC
                                3. MIGRAINES
                                4. MITRAL VALVE PROLAPSE

                                CURRENT MEDS:

                                1. BABY ASPIRIN
                                2. NEXIUM
                                3. SANCTURA
                                4. URELLE-had to stop beacause of intense itching
                                5. BLADDER INSTILLATIONS (twice a week)
                                3. PYRIDIUM
                                7. DIET MODIFICATIONS

                                Comment

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