Announcement

Collapse
No announcement yet.

Hydrodistention- Neg or Postitive Results

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

  • Negative experience. I did get a diagnosis but now they are even wondering about that and also it definitely made me feel worse and haven't still recovered and it has been almoost 4 months.
    I would never get another one of these done!

    Comment


    • Tell the doctors!

      Originally posted by StephN View Post
      Negative experience. I did get a diagnosis but now they are even wondering about that and also it definitely made me feel worse and haven't still recovered and it has been almoost 4 months.
      I would never get another one of these done!
      Tell your doctors about your experience. It is the only way we can turn this horrible upsetting experience into something good. Let the doctors know and save others from going down the same, painful road. The doctors should be informed about the risks, and make them clear to whoever they ask to have this procedure done. The patient has a right to choose, and to have all this information - the pros and cons - outlined to them. I didn't. I blame the doctors, fully, but in order NOT to go crazy with anger, I have decided to believe that my "poor" doctors did not know the risks. This is why I wrote EVERY SINGLE doctor who has treated me in the last 9 years and told them of my experience. Not surprisingly for some (and surprisingly for me), neither of them acknowledged the letter (which was formulated as a simple account of my experience and as an advice, NOT as a blaming letter).
      2001 first UTI. Symptoms (mainly burning pee) never really disappear
      2001 - 2009 symptoms of UTI with varying results of lab tests. For the first 2-4 years, diff. bacteria cultured at different times.
      2004 - 2008 no more bacteria found in urine. Symptoms (burning pee, burning after sex, burning uretra after peeing) persist.
      Jan 2009 Cystoscopy with hydrodistention and biopsy. IC confirmed. Post-operation complications: pain, symptoms of full blown UTI.
      Jan - March 2009 lab results: Strep-Agalactie, then e-coli (about 3 wks later), then Strep Veridians, then e-coli, then Enteroccocus Faecalis, .... eventually, fed up, I give up on prescribed antibiotics and travel far away ...
      I killed the bacteria through natural means and have chosen to use dietary supplements, rather than medications, ever since. The 2009 Cystoscopy with hydrodistention made my symptoms permanently worse. Whereas before the procedure, my "IC" was a nuisance, that did not significantly affect my every day life, after the procedure I started experiencing previously unknown bladder pain, started waking up at night many times with pain and burning, and sex, previously a source of great pleasure has become painful. All this has had a devastating effect on my life in general: on my sleep, my work, my romantic and sexual life, my social life and my perception of myself.
      I have however many good days and overall, my IC is stable and manageable without medications.

      Comment


      • Worse after hydro

        I had my 2nd hydro ten days ago and feel worse than before I had it. I am thankful to see some other people had trouble too, because I was getting worried we were going down the wrong path. I was bedridden for several days and very very sick. I have more energy now, but still feel "inflammed" on my lower left abdomen and pelvis. Hoping this will go away soon. Supposed to go back to work on Tuesday. Anyone on an anti-inflammatory? I'd like to explore that with my urologist next Monday.

        Comment


        • Hydro

          I think mine helped. Now I'm talking about my actual hydrodistention done under anthesia and with pain medication afterwards. My cystoscopy that I had done by a uro that apparently didn't believe in IC, was hell. that was done in-office, no pain medication, fully awake. It only made things worse!

          I had alot of pain when I woke up after the hydro to, and that first couple of days. But I think overall, it did help.

          I think Elmiron has helped the most though. I might consider another hydro if my symptoms got to be unmangeable again.

          But for now I'm sticking with staying on Elmiron.

          IC Symptoms since 04/05
          Finished NIDDK Amitriptyline Study 11/05


          Current Meds:
          Elmiron 400mg (since 12/13/05)

          Comment


          • Janice,
            Do you have any symptoms now? How long ago did you have your hydro. I also noticed you were in the amitriptyline study, but don't have it listed as one of your treatments. Is this because it didn't work for you or that the Elmiron has worked so well?
            Teresa

            We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

            Comment


            • Hydro

              My Hydro was in March 2008.

              I did use amitriptilyne for about 6 months, but I had to stop because it would give me heart palipatations.

              Fortunatly by then, I had also been on Elmiron for 6 months, which apparently was enough time for it to start to work, because after stopping the amitriptilyne, I didn't need additional pain medication.

              I still have symptoms, some days worse than others. Mainly, my symptom is frequency and pressure. Thats been my main complaint all along, though before I was diagnosed, the pain would get bad to, sometimes direct bladder pain and/or just an all-over "ill" feeling. Now, I have alot of very good days when the frequency isn't bad at all, and I haven't had any bladder pain to speak of for some time now, probably 2 years or so (except for immediatly after the hydro of course).

              But like I said, after 6 mos on the Elmiron, I was lucky enough to see enough improvement on it that things did not go downhill once I had to stop the amitriptilyne.

              I did notice alot of improvement, about 3-4 months after the hydro. Whether it was the hydro, elmiron, or the combination, I'm not sure. But I definetly have many more good days than bad now.

              Janice

              IC Symptoms since 04/05
              Finished NIDDK Amitriptyline Study 11/05


              Current Meds:
              Elmiron 400mg (since 12/13/05)

              Comment


              • newly diagnosed

                I go bac to my urologist next week and he wants to talk about doing a hydro... any info to help prepare???? very nervous....

                Comment


                • I had my first Hydro in Dec 07 along with cystoscopy Dec 07. I did make me feel better for about 6 months then I had a flare up. Well Dec 09 I had another Hydro along with pudendal nerve block and laproscopy (to diagnose Endometriosis) and it made me so worse. My bladder started retaining and I had to stay in the hospital for 2 days then was discharged with a Foley for another 4 days. After talking to my doctor afterwards he said that Im someone who should never have one again, my bladder is so bad right now all a hydro will do is make it worse. Usually it does calm down the bladder and is another way to diagnose IC. If you havent had one before and the doctor wants to see your bladder its a great way of doing that. I know have update photos of my bladder (and entire pelvis) to keep on record for future use. So im 50/50...first time worked second time didnt.
                  IC diagnosed: Dec 07
                  Endometriosis diagnosed: Dec 09

                  ***Started Pelvic floor physical therapy May 09 to current

                  ** Bladder instils 3x week with Elmiron in the instill

                  *CURRENT MEDS
                  Atarax-50mg nightly
                  Lunesta-2mg nightly
                  Colace-100mg 2x day
                  Singular- 1x day
                  Valium-5mg as needed
                  Flexeril-10mg as needed
                  Dilaudid-2mg as needed
                  Pyridium-200mg as needed
                  Ditropan-5mg as needed
                  Motrin-600mg as needed
                  Norco-325mg as needed

                  Comment


                  • Hi!
                    Wow! Just saw this on the hydro forum and have been reading the replies! IC is such an individually flaky disease!

                    I've only had one hydro and that diagnosed IC and I carried the photo out of the hospital. The diagnosing urogyn was too surly and I switched to a urologist who specializes in IC and have been taking a plethora of meds ever since early Dec 2009.

                    My experience of the one hydro so far was positive and all the medical personnel were very kind and patient with me. I am a survivor of childhood sexual abuse and do have panic attacks when dealing with medical stuff in this area of my body. The post-op nurse was particularly wonderful and told me very explicitly what to expect and what would warrant a call to the doc in the weeks following the procedure.

                    Since the procedure I've been on meds for IC and have been attentive to diet and I have learned some more Mindfulness-Based Stress Reduction techniques for dealing with pain. All of this has been helpful and I've stayed pretty calm and cool. I've finished 3 instillations in the office and will have 3 more beginning this next week.

                    I was informed at my last instill that the urologist wants to do another hydro because the urogyn did not do biopsies and he wants to see the bladder himself and make sure we're on the right track. I was a little ticked that the urogyn did not do the biopsy thing when she was there. Obviously they have to rule out cancer and since both my parents have serious urological issues--including bladder cancer--DAAAA!-the urologist is major-league concerned!

                    I can't have the next hydro until April 23 so who knows what we'll do in the meantime. My symptoms, particularly pain are much worse in the last week--snow shoveling through two blizzards has not helped--but I will see the urologist this week.

                    Sorry this is so long! You asked a simple question and you got much more information than you could've ever wanted!

                    Thanks for this thread! It is very helpful!
                    Nuthatch

                    Comment


                    • Its good your new urogyn is going to take a look for themselves. My doctor now believed I had IC but said its better for to see for sure and and see how the IC is affecting the bladder for himself. Instills are good but not a cure. I have noticed relief only for 24-36 hours after them so I recieve them on Mon, Wed, and Fri and will soon learn how to do them at home because its difficult constantly driving downtown and waiting and so on.

                      Overall I say a hydro is a great way to see where your at and make sure there arent any ulcers, polyps, and so on plus having a picture of your bladder is kind of neat.
                      IC diagnosed: Dec 07
                      Endometriosis diagnosed: Dec 09

                      ***Started Pelvic floor physical therapy May 09 to current

                      ** Bladder instils 3x week with Elmiron in the instill

                      *CURRENT MEDS
                      Atarax-50mg nightly
                      Lunesta-2mg nightly
                      Colace-100mg 2x day
                      Singular- 1x day
                      Valium-5mg as needed
                      Flexeril-10mg as needed
                      Dilaudid-2mg as needed
                      Pyridium-200mg as needed
                      Ditropan-5mg as needed
                      Motrin-600mg as needed
                      Norco-325mg as needed

                      Comment


                      • Negative

                        Hydro cystoscopy or both well i thought it helped cause this morning after yesterdays surgery i got up at 9 peed took anti with 8oz of water and was able to sleep 3-1/2 hours after wich im never able to do after drinking that much water. Later in day constant urgency and frequency peeing every 10 minutes. Now i find redness on face and read rotator cuff can be injured from cipro. I already have rotator cuff tendinitis. Called doc on call he said stop peryudium and pain meds cause that too can cause facial redness and take another ciproi and if its worse tomorrow stop the cipro.
                        Good think even though i had had it in 1997 by another doc this convinced this doc it was correct and its real badand he thinks i may have something else going on with the bladder as well.
                        IC ulcerative proctitus lower back pain uterine fibroid allergies

                        A friend is a person who reaches for your hand and touches your heart

                        There are no rules. That is how art is born, how breakthroughs happen. Go against the rules or ignore the rules. That is what invention is about. Helen Frankenthaler
                        :woohoo:

                        Comment


                        • It was very positive for me. I had a diagnosis and the hyrdro put me into remission for several years
                          Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

                          “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus

                          Comment


                          • Mines worse after

                            Well my IC is worse after thsi Hydrodistention/cystoscopy. Thought about going in to hAVE URINE CHECKED FOR BLADDER INFECTION BUT DECIDED NOT TO. HAD IT 9 DAYS AGO
                            IC ulcerative proctitus lower back pain uterine fibroid allergies

                            A friend is a person who reaches for your hand and touches your heart

                            There are no rules. That is how art is born, how breakthroughs happen. Go against the rules or ignore the rules. That is what invention is about. Helen Frankenthaler
                            :woohoo:

                            Comment


                            • Cysto and Biopsy

                              Ladies and Gentlemen:

                              I'm afraid to go ahead with the hydro. Can my doctor diagnose IC via biopsy? Mast cells/inflammation???

                              Lost with this one.

                              Thanks!!!
                              Maria



                              Current medication: Soul-searching

                              Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




                              Comment


                              • The new guidelines state that IC/PBS can be diagnosed on symptoms alone after excluding other causes. I guess it depends on whatever your uro is comfortable with making the diagnosis. I went in just for the cysto to rule out bladder stones or cancer etc., but since I asked for sedation which worked really well on me he went ahead and did a minor distention. I was fine afterward, but don't think I will have another.

                                Comment

                                Working...
                                X