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  • Hydrodistention question

    I had my hydrodistention and lap yesterday. I had no complications which is good. However my gyn states that I have severe IC. she did a distension on me and I feel a lil better. there is less pain and urgency but still frequency. she doubts cause of my condition that the effects will last very long Is it true that it could take two weeks to see if the hydrodistention is effective?-thanks
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  • #2
    After I had my first hydro I was in severe pain for 10-14 days. My symptoms got worse and my nocturia got up to about 8 times a night. I had mine Jan 28th and now I'm feeling much better. My frequency is improved (10-14 times a day) and 1-2 times at night, sometimes all night. After I first got it done I thought it could never get better. I'm having another one in a couple of months, my uro only does surgery every first monday of the month so it kinda sucks.
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

    Comment


    • #3
      The length of time a hydrodistention can help varies a lot. This has been a major treatment for me and I have had the procedure over forty times in my 36 years with IC. I have gone anywhere from six months to just under two years between procedures. I had my last one in October of 2009 --- I am beginning to have some symptoms again, but will probably go another month or two at least.

      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


      • #4
        When you first started getting relief how often did you get them? Does it improve the more times you get them (like the relief lasts longer)?
        Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

        Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

        Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

        Comment


        • #5
          The times have varied from the very beginning. After my first one I went almost two years --- I always think of anything over six months as a bonus!

          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
            I just had one this past Friday. I too have this as a big part of my treatment; I can go about 6-8 months- my doctor said that if it last 3 months or so I am doing great!
            I do have pain the first few days afterwards, I stayed home from work today as it does hurt to a degree (but I figured that I usually bounce around all day so I am playing it safe).

            Around 6 months they start to pop back up again. I can usually wait for another month before I schedule another one.

            Comment


            • #7
              I am looking at the possibility of getting my first hydro. I have IC for 4.5 years and up until about 6 months ago was cruising along great. I have been through the gauntlet of meds (amytriptyline, hydroxyzine, ditropan, cystoprotek) and am still have some mild discomfort. About two weeks ago I started on a higher dose of the hydroxyzine. I was bad yesterday and drank a RC Cola, which is probably not making matters any better. Should I give the hydroxyzine a little more time to work? I've also read some horror stories about hydro and it makes me really nervous about getting one done. I am currently in college and can't afford to miss any classes since we have 5 weeks left. How expensive is the procedure? I have minimal insurance and can't afford a $1000 bill. Any advice or answers are appreciated.

              Comment


              • #8
                Mine cost $5000; that was about 5 years ago and the day after the procedure I felt like a new person.

                Comment


                • #9
                  I called the uro yesterday and am waiting to hear back from her to try to schedule the cysto/hydro. Some days I have that "gotta go" feeling a lot and some days I don't. One thing that I have noticed is that it's worse at night, especially after I shower for some weird reason. I am hoping that I can get in fairly soon because I am tired of feeling crappy. Sometimes I worry I might have an accident, but never have thank God!!! I am on pretty much every med that is usually prescribed and it's working for the most part. I just want to feel somewhat "normal" again. I'm in college right now and have 4 weeks to go and worry how I'm going to get through exam week if I have to pee during an exam. Not sure if I should say something to my instructors now or wait and se if I can get the cysto/hydro done first. I am so confused and stressed out right now.

                  Comment


                  • #10
                    I also get discomfort after I shower, my bladder feels very dry, it's because of all the additives in the water and the worst is the chlorine. If I shower quickly I feel better. Also the shampoos causes me dryness so, I both a hand shower and I wash my hair separately.

                    Comment


                    • #11
                      I too am considering a hydrodistention to try to find some relief. I feel so bad for you that you are so young and going through exams just causes stress and that stress leads to more pain and frequency. I have tried all the drugs too. Now I am trying elmiron for the first time but it is making me sick even if I take it out of the capsule. I feel like you, I just want my life back. Let me know what you end up doing. God Bless and good luck on your exams.

                      sully

                      Comment


                      • #12
                        I was diagnosed December of 2004 and have had prob 9 hydro's. I usually have minamal pain the next day or two a d then after that I feel sooo much better. I actually had one yesterday and this time has been different. Of course I would be getting mairried in 17 days and I would have a bad experience! I am in terrible pain today so bad that I had to leave work and 7.5 mg percocets are not touching my pain. I will attest to hydro's normally being the best form of treatment for me other than my inner stem. I hear everyone is different though. I wish I had more advise for you. I wish you the best. I actually started a new thread before I read this talking about my experience and asking for help this has been a rollercoaster for me. But we have to stay strong and positive!


                        Confirmed IC in December 2004
                        InterStem placement November 2007
                        InterStem removed and replaced May 2011
                        Fibromyalgia confirmed 2005
                        PFD 2005
                        Endemetriosis confirmed 2005

                        Positive outlook confirmed 2007 immediately after my InterStem placement. I realized that the one day of "peace" that I prayed for EVERY day and night had been granted. If I can keep that moment of pure bliss stored in my memory I can get through anything!

                        I know that I can fight this terrible situation I am in! I have to..... I have a 7 year old daughter who needs me and a soon to be husband that need me to be strong and optimistic. First and foremost I have to live my life the best way possible for myself. Things could always be worse. I have to remind myself that often but it is true!

                        Comment


                        • #13
                          I am so sorry this is happening to you right before your wedding. Maybe it has something to do with the stress of the wedding............why did you do it now? Were you having pain and other symptoms? I am so confused. I am encouraged by the thought that all the other ones were helpful, can you say how long they helped before you needed another one? Are you on elmiron? I know stress is the reason I got IC and I know that stress will make me flare. That is the only thing I know for sure about IC. What a mystery illness. I can't belive you went to work the day after having the hydro done, it must usually not be an issue for you. God Bless and I hope you feel better soon, maybe the Dr could prescribe something more for you, did you call her yet? Do you have a uro or gyn do it? Thanks for all the info you can offer. Baking soda baths always make me feel better too.
                          sully

                          Comment


                          • #14
                            Sully,
                            I can not take elmeron. I usually get about 6 months of some relief with re occasional flare up. I did it prior to the wedding because I started having daily flare ups and I did not want to have this pain and frequency during my wedding/ honeymoon. I have the inter stem placement that helps with frequency unless I am having a flare up. I am going to see the doctor in a few min so hopefully he can give me relief. I just don't want to miss too much work and risk my job. I am already getting ready to miss alot of work for the wedding/ honeymoon


                            Confirmed IC in December 2004
                            InterStem placement November 2007
                            InterStem removed and replaced May 2011
                            Fibromyalgia confirmed 2005
                            PFD 2005
                            Endemetriosis confirmed 2005

                            Positive outlook confirmed 2007 immediately after my InterStem placement. I realized that the one day of "peace" that I prayed for EVERY day and night had been granted. If I can keep that moment of pure bliss stored in my memory I can get through anything!

                            I know that I can fight this terrible situation I am in! I have to..... I have a 7 year old daughter who needs me and a soon to be husband that need me to be strong and optimistic. First and foremost I have to live my life the best way possible for myself. Things could always be worse. I have to remind myself that often but it is true!

                            Comment


                            • #15
                              Upadate from doctors visit...

                              I posted an update on my thread " pain with hydro....." in case anyone is interested. I hope everyone has a wonderful and pain free night


                              Confirmed IC in December 2004
                              InterStem placement November 2007
                              InterStem removed and replaced May 2011
                              Fibromyalgia confirmed 2005
                              PFD 2005
                              Endemetriosis confirmed 2005

                              Positive outlook confirmed 2007 immediately after my InterStem placement. I realized that the one day of "peace" that I prayed for EVERY day and night had been granted. If I can keep that moment of pure bliss stored in my memory I can get through anything!

                              I know that I can fight this terrible situation I am in! I have to..... I have a 7 year old daughter who needs me and a soon to be husband that need me to be strong and optimistic. First and foremost I have to live my life the best way possible for myself. Things could always be worse. I have to remind myself that often but it is true!

                              Comment

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