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DMSO installations for urethra irritation?

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  • #16
    Elavil does not help with my frequency at all. Neither did Atarax. Even though I use the restroom every hour during the day, and every half hour during major burning days, I only wake up once during the night.

    Melinda,

    How long have you been on nortriptyline? I haven't filled my 10 mg yet of that one. I asked my nurse to ask the uro which had less weight gaining properties, lexapro or nortrip..... I wasn't specifically answered, just handed the nortrip.. I don't know if it is the upper tip of the urethra that burns or the whole outside of it. The pain doesn't radiate up the urethra, it just feels like the whole of it burns. Sometimes, the burning goes to the vaginal opening too but mostly it is the urethra. When it doesn't burn, it feels like an irritated feeling. Does nortriptyline help with that too?

    Thanks. Feel free to PM me anytime.
    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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    • #17
      HI all!

      Sorry it has taken me so long to get back to your quetions. My son has been on Spring break so I have not checked my computer in awhile. I switched to the Nortrypltline because I could not go any higher than 20mg on the Elavil without intense food cravings! I have not had any weight gain or food cravings on the 30mg of Nortyptlyne. And yes, I can say I think it has helped alot! It is definately worth trying!

      I have never had frequency/urgency per say so that has not been an issue for me. My urethra has been my worst symptom. I have noticed over the past year more discomfort in my bladder, so that is why I am considering the DMSO installations. My Uro also recommened Lyrica, so we are going to talk asbout that when I see him next month.

      Melinda

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      • #18
        Hello from Canada, I had the DMSO treatments with Heparin (a blood thinner) here in Canada. I went last year once a week for six weeks. Here Nurses insert the treatment via catheter. Before the cocktail they insert a freezing jelly to numb any pain. I found it difficult to keep the medicine inside for the required 45 minutes because of the pain. But the last few treatments were alot easier and I would say the IC pain subsided for about 6 months after the treatment then returned.
        I have also just received a Chlorpactin treatment while I was knocked out. I woke up bleeding from my bladder and morphine didn't touch the pain I felt. After 2-3 weeks the chlorpactin treatment seemed to be helping but it's been about 6 months and the apin has been back for about a month.
        I was taking Elmiron 3X a day for about 2 years but my hair is thinning terribly so I'm taking a break from it for a while.
        Here the DMSO & Chlorpactin treatment is free but I haven't noticed much of a long term effect so I'm not pursuing anything right now.
        Regards, Mariel

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        • #19
          My uro prescribed 10 mg of nortriptyline because I was having such intense cravings at 10 mg of Elavil. I will start the former tomorrow night.

          I have had 15 DMSO instills since 7/06. I was told to hold it in for 15 minutes. I thought a person wouldn't be able to hold it in longer than that because of the pain DMSO causes. I too have lidocaine inserted into the urethra but it doesn't help much. DMSO haven't help me but the uro kept wanted for me to have them.

          I go back to the uro on May 16 for consultation. If I don't schedule a consultation then I only get my instills from the nurse.
          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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          • #20
            To Bunnykinb

            Hello again from Canada. Bunnykinb it sounds as though you have had quite a bit of experience with the DMSO instills. I have had IC for 7 years since I was 35 and at my last cystoscopy was told that my bladder capacity is at about 200ccs. (I pee alot!)
            It has been my experience that the instills including the chlorpactin work for short periods of time, about 6 months for me, and then I'm not sure why but the pain always returns. As I mentioned the Elmiron is making my hair thin so I'm taking a break off it...it's also about $400 a month here in the north which is quite expensive.
            I find my symtoms are not as bad when I've been on my feet working all day as opposed to sitting so my strategy has been to try and keep busy. Although at times I do feel like I'm on the verge of exhaustion since I get up frequently at night. Also like many of the other IC friends I find that sex can be painful in certain positions and also irritates my bladder for days afterwords. Not great when it is really hard for a guy to understand why you can only have sex in the guy on top position and it can't last for too long either! I truly wish that there was a support group in my area because I sometimes feel like no one understands what I'm going through. I feel sick and exhausted but everyone puts demands on me like I'm healthy because they can't see my IC. I was happy to find this support online cause this IC business is the best kept secret in town!
            Regards, MAriel

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            • #21
              MPuppies,

              Oh gosh, I feel for you and everyone else on this planet who has this awful disease. It is one thing to have a disease, but it is another when you just can't feel good no matter what is done.

              There are people who have had the DMSO and feel relief and also have to hold the solution in for an hour. Yet, there are some people who have said that one should only hold it in for no more than 15 minutes for 50% solution. I will write down to remember for the uro next month that (1) I only can hold the solution in for 10-15 minutes depending on how gentle the nurse is (2) after 15 DMSO treatments, wouldn't the uro think that it is time to call it quits? (3) what else is left for me? I will start nortriptyline tonight. I didn't know it came in a capsule.

              My husband and I finally had sex and he was quite happy. He is pretty understanding about not doing things as often as he would like before my IC. So far, I don't feel ouchy. I did have an irritated feeling not on the urethra but on the sides, I guess that would be the labia (?) I put some steroid cream from my primary care doctor "nystatin triamilosone" and it helped. It is not the usual urethral burning. I have also taken CystaQ for the last 4 days and have felt better for the last 4 days. But, I won't count my chickens before they hatch.

              bunnykinb
              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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              • #22
                Bunnykinb,

                The Cysta Q has helped me dramatically. Keep giving it a chance!!!! At least three months. I tried quite a few things, and nothing has helped me like the Cysta Q. My frequency, urgency, hesitancy, and urethral burning have all gone down a lot. I hope you have the same result!!!

                Di

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                • #23
                  Di,

                  Is that CystaQ the same as Cystoprotek? I take that in conjunction with the Desert Harvest Aloe caps. My symptoms are better, so I am afraid to discontinue anything!
                  Melinda

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                  • #24
                    Cysta Q is different from Cystoprotek. Cysta Q has quercetin which is in Cystoprotek, but the rest of the ingredients are different, and they work in a different way. Cystoprotek helps coat the bladder. I got heartburn from Cystoprotek so I switched, and that's when I discovered Cysta Q worked better for me.

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                    • #25
                      I have been following this thread with great interest. Now that have something factual to contribute, I'm jumping in! Melinda, no the CystaQ and Cystoprotek are different formulas, but I think the active ingredient in both is quercetin. I have been SO happy with the CystaQ and freeze dried aloe; I think they are doing together what the elmiron is supposed to do, but hasn't.

                      I am also feeling good with 2X weekly instillations of heparin, lidocaine (it is also preservative free in injectable form) and sodium bicarb. All I need on the cath is plain old KY and my husband's very gentle hands to guide it in. Who it's done by can make a huge difference. I was catheterized in a hospital recently by a nurse, and she just rammed it in there. I bled for two days from my uethra!

                      I find that lidocaine partially numbs my bladder; enough to stop any active burning, but not so much that I can't feel fullness, or can't pee. It is not meant to be long-acting; the heparin or elmiron or whatever you get with it is the active ingredient that is meant to help your bladder lining heal. Sodium bicard is included to help the solution bind to your bladder wall cells, but some people also find it soothing. It really isn't necessary to lie in all those different positions to coat your bladder, but it can' do you any harm either, LOL.

                      I don't know who-all I'm responding to on this thread anymore, just throwing out everything I know or have experienced, in hopes that it will help someone! One possibility to consider is, are you allergic to latex? Bc. it can be the catheter itself causing you problems. I believe they still make glass catheters for this reason.

                      Anyway, good luck everyone! I am starting to respond well to a massive medicinal cocktail (plus CystaQ and Aloe, both approved by my dr.), regular instills, not being at my job anymore (stress elimination), and relaxation therapy. I have not been able to tolerate elavil well; at 10 mg it doesn't seem to do anything; at 20, I can tell it's helping with pain and frequency but it's also making me sleep all day, and I'm starting to have those food cravings... I'm going to ask about nortriptyline, next time I see the doctor. Thanks for the tip!

                      Be well, everyone.
                      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

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                      • #26
                        That pool image sure looks refreshing especially since it hit 90 degrees today. Oh, I have to buy a new swimsuit to stuff myself in.

                        I truly believe too that it matters how the cath is put in. I had a nurse who just jammed it in like it was a plunger. My urethra hurt so bad for days. When I saw the other nurse who I had before, I asked her if she would please do the instill instead. The uro is very gentle as well.

                        Well, I took my first nortriptyline at 10mg last night, plus I continued the CystaQ in the morning.

                        For those who take CystaQ, do you take the recommended 2 capsules a day? I had used it before but stopped for a reason I can't think of right now. It is the day after time with the hubby, and so far I don't have any urethral pain. This is my 5th or 6th day with out urethral pain, however, I have had to take motrin for some pelvic pain. I don't think it is related to my monthly since I am on the pill and won't start for another week.

                        I am truly blessed with everyone here who listens to whatever complaints I have.
                        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


                        • #27
                          Has anyones uro approved Cysta Q taken in conjunction with Elavil or nortriptyline?

                          Thanks.
                          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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                          • #28
                            Yes, my uro knows I'm taking CystaQ and elavil.
                            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


                            • #29
                              I am wondering how many DMSO instills has a person had over a consistent time period. I have had 15 from July 2006 until now. I can't hold it more than 15 minutes and am wondering if that is why I feel no relief. I see the uro again May 16 and will ask why I am continuing with DMSO if I haven't had any 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


                              • #30
                                DSMO Treatments

                                Hi Bunnykins, I'm not sure how many DSMO treatments are the norm but I had 6 over a six week period and was told to hold the Heparin and anti-inflamatory cocktail in for at least 45 minutes.
                                The first few were quite painful but I did find some relief toward the last couple of treatments.
                                Mariel

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