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  • #16
    There is clinical trials on IC:
    http://www.clinicaltrials.gov/ct/sea...t+cystitis.y=5

    Hopefully they will find a treatment with long-term relief because instillation for a man is not fun to do.

    Comment


    • #17
      Originally posted by Tip and IBS View Post
      There is clinical trials on IC:
      http://www.clinicaltrials.gov/ct/sea...t+cystitis.y=5

      Hopefully they will find a treatment with long-term relief because instillation for a man is not fun to do.
      You are absolutely correct about that. I had to stop doing instillations after two treatments because they were more painful than the IC. I just couldn't take it.

      Comment


      • #18
        Up Date L. Thomas

        I went to my urogynecologist yesterday. Everything is still on track and going strong :woohoo: . I go back for a 6 month follow-up in October.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
        I post to encourage and offer total support for rescue instillations.
        Find me on facebook: L. Clark Thomas
        Louann

        Comment


        • #19
          Wow, I am really happy that the instills are working for you. That is great. Hope things continue to go smoothly for you.
          Jen

          Comment


          • #20
            I've been trying to decide if I should do rescue instillations at home. I even took the prescription to the drugstore, but haven't picked it up. You seem to have had great success! That gives me hope. I have mild IC and the urologist wanted me to take Elmiron, which I do not want to take--I have an aversion to systemic meds--so I asked about instillations and he was all for it. It sounds kind of complicated. He said my husband could help me, and my husband is game, but I would rather do it myself. He wants me to do it daily, but I'm not sure how long I have to do it daily.
            I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.
            Nancy

            Comment


            • #21
              I have been so successful with instillations taking care of my symptoms I really hope those who would like to try it will. I have a link in my signature that I have tried to give the instructions that I use.

              When I started I was instilling 3 times a week but I had to increase to 7-9 a week. Since that time I have reduced the nomber of instills to an average of 3 a week. Sometimes more, sometimes less. I don't really even think about how often. When symptoms are starting I just do an instill and it takes care of everything. I get immediate relief. BUT I know that it doesn't work that way for everyone.

              If your MD is supportive I think you will do great. Just give yourself some time and be patient. Understanding your own anatomy was really important for my success.

              Take it one step at a time and if you have questions ask your MD. PM me if I have confused you with any of the home instills instructions.

              After all, if it is something that just isn't working all you have to do is stop. I think home instillations is just another way to treat IC that works for some. I have read enough that I know it doesn't work for everyone. I was 55 when I was diagnosed. My normal bladder capacity is 550cc+. And that is not stretched. My urogyn won't instill more than 550cc for urodynamics and cysto evaluations. Hydro wasn't necessary. He could tell with cysto and symptoms that it was IC.

              Really the main reason I post is to give some encouragement. I have watched and it seems people come and go on the boards. I thought if I hung around for a while maybe it would be helpful to others.
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas
              Louann

              Comment


              • #22
                If you aren't sure about this working for you, perhaps just filling part of the prescription and supplies would be a good idea. You can probably go back and get the rest later. It seems to be empowering those suffering from IC to treat and arrest symptoms at home. It is always great to avoid one more doctor appointment!

                I wish you the best.

                ads

                Originally posted by lutznancy View Post
                I've been trying to decide if I should do rescue instillations at home. I even took the prescription to the drugstore, but haven't picked it up. You seem to have had great success! That gives me hope. I have mild IC and the urologist wanted me to take Elmiron, which I do not want to take--I have an aversion to systemic meds--so I asked about instillations and he was all for it. It sounds kind of complicated. He said my husband could help me, and my husband is game, but I would rather do it myself. He wants me to do it daily, but I'm not sure how long I have to do it daily.

                Comment


                • #23
                  L.Thomas

                  You said the instill took care of IC and constipation.
                  Did you had irritable bowel?

                  I haven't been diagnose with IC yet since my locals urologist dosen't care to investigate their patients.I'm sure i have irritable bladder and irritable bowel tho.

                  Comment


                  • #24
                    Irritable bowel was never suggested. My gynecologist was concerned that after extensive pelvic reconstruction I developed involuntary flatulence. He felt so guilty because he thought he has caused it.

                    He was diligent about finding a urogynecologist that could help. It happened pretty fast and I am not sure that constipation was ever his big concern. It was for me. The 3rd urogynecologist diagnosed IC on my first visit.

                    I think all of my other symptoms took a back seat because my gyn was so concerned with what I call the “walking farts”.
                    Last edited by L. Thomas; 04-15-2007, 12:59 AM.
                    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                    I post to encourage and offer total support for rescue instillations.
                    Find me on facebook: L. Clark Thomas
                    Louann

                    Comment


                    • #25
                      vaginal vault

                      Thomas, did you ever get the vaginal vault prolapse fixed? Did it help with your UT symptoms? What caused the vault prolapse?
                      I just had a laproscopic hyster and I can tell you that almost everyone on the HysterSister board is having post surgical pee symptoms. The uro says the bladder is just trying to recover from the surgery and it will calm down, but I bet a lot of these post surgical traumas never heal right?

                      Sammi

                      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                      Diagnosis: IC, PFD (both in remission)

                      Comment


                      • #26
                        I was evaluated in Sept for a new procedure that my urogyn learned in France last year(and is teaching a med schools now). Vault prolapse is abdominal surgery and really nasty recovery. But the technique he learned is vaginal procedure or at least for the most part. After evaluation he suggested that I wait a little longer. The prolapse has progressed more but (as insensitive as it sounds) I am not falling out yet. The surgery would probably help a little now. That sounds to me like the surgery wouldn't affect my IC that much. I can say that I can see how regular bladder prolapse repair would help IC. It took care of my stress incon. 100%. That surgery puts the bladder in the proper place. Unfortunately because of the vault prolapse my bladder is still prolapsing.

                        Urge incon is a problem that does occur after bladder sling. It is not rare but it is uncommon. I think most of the bladders do calm down but the way I understand my urogyne my bladder is in shock and shaking instead of contracting. So the instills calm it down and then for a few days, sometimes a week or more, it works great.

                        The vault prolapse is just like any prolapse. It is when the top of the vagina continues to fall. It may be cause from failure of the ligaments that were attached to the top of the vagina failed. Anyway if you have a vault prolapse you will know the exact day, time and place it happens. It doesn't hurt but the sensation is sort of like the game "London Bridge is falling down" and it was that fast.

                        My surgery was a 6 procedure 4 hour surgery. It was total lap. surgery. I had oophorectomy, plastic surgery to repair the pelvic floor and baldder, large intestine, small intestine, uterine prolapse repair. He called it the "Blue Plate Special".
                        Last edited by L. Thomas; 05-04-2007, 04:17 PM.
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas
                        Louann

                        Comment


                        • #27
                          Prolapse

                          Thomas; did your prolapse occur as the after effect of a hysterectomy? If not that, then what do you think caused it to happen?
                          Sammi

                          Sammi

                          Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                          Diagnosis: IC, PFD (both in remission)

                          Comment


                          • #28
                            Originally posted by sami4 View Post
                            Thomas; did your prolapse occur as the after effect of a hysterectomy? If not that, then what do you think caused it to happen?
                            Sammi
                            The prolapse was about 6 months after the surgery. My gyn said it was related to the ligaments that were reattached to hold the vaginal cavity in place. As you can well tell, I had no pelvic support whatsoever. He was not too surprised. Neither was I. My muscles and ligaments were just shot and had no support. I don’t think you can have a vault prolaspse unless you have had a hysterectomy.
                            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                            I post to encourage and offer total support for rescue instillations.
                            Find me on facebook: L. Clark Thomas
                            Louann

                            Comment


                            • #29
                              Updated Success Story

                              Just wanted to renew my success story because I added more information that might be helpful. Thanks for reading my thread. Let me know if I can help.
                              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                              I post to encourage and offer total support for rescue instillations.
                              Find me on facebook: L. Clark Thomas
                              Louann

                              Comment


                              • #30
                                Hiya,
                                i am very happy for you that you are feeling well and that the home installations are the treatment No 1 for you. I live in England at the moment but i am German. i am flying home today for only 3 days to go to my urologist to learn how to self catherize. Do you think that 2 visits at the doctor will be enough to do it myself? Doctors here in England are crap!!! They want around 600 USD for one installation! So i'd rather do it myself. I am very scared but i have to be brave to make it as i dont have a choice. I will be having Chondrotitinsulfat installed into my bladder. Hope it works.
                                I'll keep you updated.
                                I printed out your very helpful instructions..so i will try those out...
                                thanks
                                Take care...

                                Symptoms started November 2005
                                Diagnosed with IC in January 2007
                                Diagnosed with Vulvodynia 2006
                                Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
                                Vitamins/Minerals: Neutra C

                                Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


                                Comment

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