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  • #16
    Does any of you on Cysta Q has Vulvodynia or vulvar vestibulitis and thinks Cyst Q helps?
    I have both IC and later I developed VV , I'm on Cysta Q. I read in their web page that it may help with VV . God I hope it does. It sure does with IC.
    Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
    UTIs since mid 2004
    Recurrent yeast infections since mid 2005
    IC dx 3/2006
    V V dx 12/2006
    Other conditions: IBS, allergies, dry eyes.


    Current IC medications:
    Elavil (since 12/06) 10 mg;
    Cysta Q (since 5/07)
    Rephresh acid jel every 3 days
    D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
    Probiotics Femdophilus or other brands
    Gy-Na-Tren for yeast infections (started using it as needed since 2010)
    Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


    Past Meds and why I stopped them:
    Elmiron: March to September 2006: headaches
    Lyrica:2 weeks in 2006: headaches
    Cystoprotek: from Jan to April 2007: nausea

    Femcon Fe (2/07 to 10/07):caused spotting/bleeding
    BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


    "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

    Comment


    • #17
      i TOOK the free sample bottle and really liked it. I felt better from taking it I think. I am on a lot of other meds so it's hard to be sure it was that helping me, but I think it was. I need to get more. I tried the Cysto-portek and it hasn't helped me as much.

      Comment


      • #18
        Hard to tell what is helping.

        I think most of us are on multiple meds so that it is often difficult to know which one has made the difference when we do feel better. The other thing is that healing a damaged bladder is a very long process. Most medications that actually help heal the bladder take a minimum of 3-4 months to work. During that course in time, it is actually possible that the bladder was going to heal itself anyway. I am trying cysto-protek. It doesn't bother me so I will do the suggested 4 month course and report back. So far so good.

        Comment


        • #19
          I received my 1 bottle today. I have had a sample bottle before but only took it one month. This time, I am going to use it for the 3 months specified. I had called Farr Labs the manufacturer. The cranberry powder used is acid free. I have never heard of that before. I am in desperate need of relief since I have tried many things already without relief.
          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

          Comment


          • #20
            I took the bottle of Cysta Q. Slowly, over time, of course. It seemed to help some. Then, I bought the Cystoprotek to compare and I don't think it's doing a lot for me. I will try to take it more regularly, but I like the Cysta Q better.
            It's so hard to tell though if that was what helped me or not. I still have pain every day, but am not quite as miserable as I was before. My urethra feels much better than before, but I have tons of bladder pain.

            Comment


            • #21
              Since none of the uros I have gone to, nor primary care doctors or gyno know what Cysta Q is. Does anyone know if Cysta Q can be taken while on nortriptyline, DMSO instills, Urelle as needed and Vicadin as needed? I should get my period tomorrow. I am in so much pain right now with burning. It is 1am and I am still up.
              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

              Comment


              • #22
                My doctor says okay with nortryptiline and vicodin, but I don't take the other meds you mentioned so I don't know about those.
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn
                ___________________________________________________

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                On the Beach with IC

                Comment


                • #23
                  Although my uro hasn't heard of Cysta-Q, he said none of its ingredients would interfere with nortriptyline, Vesicare, Vicadin, or Ibuprofen. Today will be the first day to start this.
                  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

                  Comment


                  • #24
                    What are the main ingredients in Cysta Q and Cystoprotek? I live in the UK and have never heard of these two supplements in any of our health shops.

                    Thanks,

                    BBx
                    Diagnosed with mild IC

                    Had Ultrasound in April all normal.
                    Microscope Cystoscopy in May and bladder looked healthy.
                    Bladder biopsy and stretch on Aug 30
                    Results of biopsy and stretch on Oct 1 showed mild chronic cystitus. No pain since start of Aug and frequency diminished after stretch.
                    Felt normal since mid sept'07

                    Current meds:
                    Elavil
                    Quercetin
                    Glucosamine with MSM
                    Tums
                    Aloe Vera
                    Acupuncture - finished course
                    Chinese herbal teas - finished course

                    Comment


                    • #25
                      I think the main common ingredient is quercetin.
                      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                      Wishing you happiness and good health, and all the best out of life.

                      Peace, Carolyn
                      ___________________________________________________

                      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                      On the Beach with IC

                      Comment


                      • #26
                        That's correct. Quercitin is the main ingredient. You can google and go teh their website and find out more about eh ingrediets. Both cost about the same and have almost the same outcome for what I can see. I liked that Cystoproteck also contained gucosamin and condritin (sp) and Cysta q doesn't. I take Cysta Q now , b/c like I mentioned before, Cystoprotek is a little rough in the stomach.
                        Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
                        UTIs since mid 2004
                        Recurrent yeast infections since mid 2005
                        IC dx 3/2006
                        V V dx 12/2006
                        Other conditions: IBS, allergies, dry eyes.


                        Current IC medications:
                        Elavil (since 12/06) 10 mg;
                        Cysta Q (since 5/07)
                        Rephresh acid jel every 3 days
                        D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
                        Probiotics Femdophilus or other brands
                        Gy-Na-Tren for yeast infections (started using it as needed since 2010)
                        Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


                        Past Meds and why I stopped them:
                        Elmiron: March to September 2006: headaches
                        Lyrica:2 weeks in 2006: headaches
                        Cystoprotek: from Jan to April 2007: nausea

                        Femcon Fe (2/07 to 10/07):caused spotting/bleeding
                        BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


                        "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

                        Comment


                        • #27
                          How is Cysta-Q doing for anyone? I started it July 11 and only had about 10 days of no pain, but I have urethral burning again.
                          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

                          Comment


                          • #28
                            let me know how it goes i just got my free trial in the mail, but also scared to take it, i have had the worst luck with treatment/meds

                            Comment


                            • #29
                              I started Cysta-Q on 7-11. So far, no improvement. I am having some more horrible burning. I haven't been successful with treatments or medications either. I read on the website that if there isn't any improvement by the 3rd month, then it won't work. I am really hoping for it to work because I am beginning to feel I am on my last leg.
                              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

                              Comment


                              • #30
                                Bunny,
                                Don't giwe up. How is DMSO working for you? Does it help?
                                Remmber there are other treatments for IC: Botox, Cytotec, spirulina, Aloe Vera, so if you haven't tried those yet, you still have some things to try without throwing the towel ( I don't think we should throw the towell anyways) try, try, and try. We are here for you if you need support. It'll get better. Are you doing something to take care of the emotional part? This illness can wear you down and you need to do all you can to keep your mind in tune since it is very connected to the immune system and to the ability to help the body heal.
                                Best wishes.
                                SMR
                                Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
                                UTIs since mid 2004
                                Recurrent yeast infections since mid 2005
                                IC dx 3/2006
                                V V dx 12/2006
                                Other conditions: IBS, allergies, dry eyes.


                                Current IC medications:
                                Elavil (since 12/06) 10 mg;
                                Cysta Q (since 5/07)
                                Rephresh acid jel every 3 days
                                D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
                                Probiotics Femdophilus or other brands
                                Gy-Na-Tren for yeast infections (started using it as needed since 2010)
                                Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


                                Past Meds and why I stopped them:
                                Elmiron: March to September 2006: headaches
                                Lyrica:2 weeks in 2006: headaches
                                Cystoprotek: from Jan to April 2007: nausea

                                Femcon Fe (2/07 to 10/07):caused spotting/bleeding
                                BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


                                "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

                                Comment

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