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  • #31
    I don't feel the DMSO has even helped at all. I am taking nortriptyline. So, I hope that will help with any depression. Yes, I have tried aloe vera. I will be one month of Cysta-q coming up in 5 days. I had a good weekend, but now I am at work today, and started up with some burning. I see the uro again this Wednesday and will ask what else to try.

    Thanks for your support.
    bunnykinb

    6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

    tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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    • #32
      Have you tried Urelle

      I have recently started Urelle four times a day. It has helped me alot with the burning and does not seem to bother my stomach like pyridium. I also had no luck with DMSO. My uro who sees a lot of ic does not use it any more, and told me he thinks a lot of uros are abandoning it because of poor response rate. Have you tried more frequent instills like several times a week? Many patients here are doing several times a week or even daily with Xylocaine and heparin. You would probably need to learn to do them yourself but that might be worth a try. Good Luck

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      • #33
        When I was having heparin instills, it was only once a month since back in mid 2004, I was only diagnosed with mild ic. It seems as if my bladder is always in a flare. My co-worker today asked if it could be all in my head. From this remark, I know she truly doesn't understand what IC is nor seems to have listened when I have told her. I try not to complain too much to her, but I need someone to listen.

        I go in this Wednesday to the uro and ask him what else can be tried. When I was getting DMSO every week, I seemed to have a constant flare. UGH said the bug.
        bunnykinb

        6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

        tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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        • #34
          Aww, what an awful remark. I have realized that some people seem not to want to understand. At least, that is how it feels and with those people (co-workers and my in-laws mainly). I just have to let it go.
          It actually makes me feel better not to talk to them about it.
          Sorry you are having such a hard time. I'm there too. This disease is so hard to manage. I take pain killers and then they make me want to sleep and have a number of other side effects.

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          • #35
            I would rather have something wrong in which I can take a pill and all my symptoms go away rather than trying different things and nothing works.
            bunnykinb

            6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

            tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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            • #36
              Wouldn't we all!! I can't say I've been helped much by anything. Pain killers just mask it.

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              • #37
                For those of you who want CystaProtek or Cysta-Q and are having a hard time getting it, you can order them here online from the ICN store! I read the interview with the doctor who says there's no acid in the cranberry, that cranberry juice is acidic, but not the little bit of powder that's in Cysta-Q.

                Thanks, everyone, for sharing your experiences. I think I might try it!

                HUGS,
                July Wolfe

                DIAGNOSES: (All in 1990 or before)
                All the "Fibro Five": Fibromyalgia, IC
                (but IBS, Endometriosis and CFS now all dormant).
                MEDS:
                Been on 100 mg. x3 Elmiron off and on for 17 years
                Tramadol (pain) 50 mg. every 6 hours
                Skelaxin (muscle relaxer) 800 mg. x2 daily
                Imipramine (generic for Tofranil) 50 mg.
                Tapering off Ambien
                Back on Estrace after 3 years off (thank God!)
                Am very faithful to Prelief

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                • #38
                  I have been on Cysta-Q since 7/11/07. I had really good days last week, but am having burning again today at work. I don't think Cysta-Q is helping but I will try it out for the full 3 months.
                  bunnykinb

                  6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                  tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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                  • #39
                    GriffsMommy & Leelee88 - It's Guniea pig, the right spelling lol I like when they whistle, those things are sensitive though.

                    Bunnykinb - How are you doing on the Cysta Q? By the way REALLY cute rabbit!!! I miss having rabbits. Hey, do they bite your wires? Bunny playing Dance Dance Revolution LOLOL!!! Good av

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                    • #40
                      bunnykinb were you having some good days before the Cysta Q? If you notice you are starting to have some good days than I would keep taking it. Maybe you will start having more good days than bad. I took Cysta Q too, but the valerian made me tired during the day. I have been thinking about trying it again. I also had trouble with the Cystoprotek bothering my stomach. It gave me acid reflux. I froze them, but they also told me to take it out of the capsule and put it on a corner of toast, or bread to eat it. I never did try that to see if that was better.

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                      • #41
                        Drinking a 1/2 teaspoon of baking soda in water can help with urethral burning. Along with an oatmeal soaked cloth. I think I read somewhere in the forum about soaking a cloth with Aveeno and water mixture, and bathing with that. I'm not sure where I read it though. Everyone is so sensitive to different things. I sometimes use Vagiguard around that area and it helps me my urethral buring. I've used Desert Harvest Aloe Vera Gel also. Ice packs between my legs too. Good luck. I hope something finally gives you relief. Tonight I finally feel a bit better for the first time in a couple of weeks.

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                        • #42
                          Glad to hear you're finding some relief Glass.

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                          • #43
                            Thanks Vampire!!

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                            • #44
                              I have a mom lop earred rabbit and two siblings. The male after getting fixed is the sweetest rabbit now. He no longer bites. The bunny dancing was created by my son.

                              I haven't had any DMSO instill for almost 6 weeks. Maybe it gave my urethra a break.

                              For Southern California residents, FYI, UCLA needs people to volunteer for a 12 week acupuncture study. Due to traffic, I am only doing the before study. The clinical trial is of no cost. You can find the details on the UCLA urology website.

                              Do you wash with Aveeno?
                              bunnykinb

                              6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                              tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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                              • #45
                                I have used Aveeno body washes before, but that is not the same as this. I believe its a mixture of the powder and water, and you soak a cloth with the mixture, and hold the cloth over the urethra or you can use regular oats with water, and the same procedure. I don't know if we can sit in an Aveeno bath or not. Maybe someone who knows more will pop in!! I'll so a search and see if I can't locate the post and thread where I heard about it.

                                And yes you have cute bunny rabbits!!! I was petting the ones at Petland last night. They are so soft.

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