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Did your instills help urgency/frequency??

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  • Did your instills help urgency/frequency??

    I just finished instill #4 (once every week for the last month). I'm still not getting any relief for my sense of urge - it stays with me even after I empty my bladder. The Elavil I'm taking seems to have addressed the pain, almost immediately, so now I'm just left with symptoms of urge...any success stories??

    They're doing Heparin instills. I'm also taking Cystoprotek, Atarax and Toviaz.

  • #2
    Hi, Hollyic ~ I'm sorry your not feeling relief yet. I had instills 3xWeek (Heparin, Lidocaine, Kenalog, Bicarb) when first starting treatment and I did receive some relief but also used Valium Suppositories, Aloe Vera, Prelief, the IC Diet, & PT. Can't remember if anything else was going on back then, but the combination of all did and still does bring on relief. I still do instills, Valium and PT as needed and stay on all the other treatments.

    Sure hope you get relief soon. Just hang in there...I never thought I'd be feeling as good as I do now. I remember being so physically and emotionally exhausted from the frequency/urgency....it was driving me crazy. Remember most IC'ers do gain a sense of NORMALCY when they find the right treatment plan for them.

    Blessings,
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment


    • #3
      It took me until I had # 6 to feel significant relief. It lasted about 2 months and now I'm getting them again.

      Detrol helps with my urgency and overactive bladder. Have you tried that? It's sort of expensive, even with insurance, so you might ask for samples. It gives you dry mouth at first, but that goes away.

      Comment


      • #4
        Originally posted by Jocotter View Post
        It took me until I had # 6 to feel significant relief. It lasted about 2 months and now I'm getting them again.

        Detrol helps with my urgency and overactive bladder. Have you tried that? It's sort of expensive, even with insurance, so you might ask for samples. It gives you dry mouth at first, but that goes away.
        Hi Jocotter, I'm wondering which rescue solution you used that helped, and whether you're using the same one this time around?
        21 years old
        dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

        ♥ looking for a way or medication to help stop spasms ♥

        Comment


        • #5
          I can't remember all that they put in my rescue treatments, but I do remember lidocaine, aloe vera and a steroid treatment. However there were one or two other things.

          Comment


          • #6
            I just had instill #6...

            No relief of my urgency/frequency...but I don't have pain anymore and (maybe this is too much info!!) had sex without a flare.

            I was taking Toviaz 4mg and it was okay but not great. I just started Gelnique today and I already have a lot of urgency and some leaking. Have any of you tried Gelnique?

            I took Detrol (2 pills) and couldn't hack the dry mouth. I took Sanctura XL for 3 months until it stopped working. Toviaz 4mg for 8 months, tried increasing to 8mg and it was too much for me, so we're trying Gelnique. Don't know if I can even hang in there for another week if it doesn't give me any greater relief.

            Comment


            • #7
              Holly, Detrol is bad for about a week, but then I found the dry mouth goes away. I have gone off it for awhile when I feel better, so I always have to go through the dry mouth period when I get back on, but it's worth if for me.

              I've never heard of those other drugs. I hope it works for you.

              Comment


              • #8
                Lidocain/heparin instills have helped with my urgency and frequency.
                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


                • #9
                  L. Thomas - How many instills until you felt better?

                  I tried Gelnique for 1 day and just couldn't function. Back on my Toviaz 4mg and I'm feeling "okay". I have another instill next Monday so I'm hoping to talk with my doctor's office re. my course of treatment. I was hoping to start Urgent PC treatments but my insurance will not cover them. I'm hoping my dr. will help to appeal. Also, I plan to start PT as soon as my kids are back to school.

                  Nanawaggs - Do you attribute any one treatment to helping with the urgency/frequency? What do you feel like the PT helped? Thanks! for your encouraging words

                  Comment


                  • #10
                    I felt relief after the first instill. Dr. Dell is 90 miles away. I didn't have to stop one time driving home. Before the instill I needed to go to the bathroom about every 30-45 mins.

                    PT didn't help me.
                    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


                    • #11
                      Originally posted by Jocotter View Post
                      Holly, Detrol is bad for about a week, but then I found the dry mouth goes away. I have gone off it for awhile when I feel better, so I always have to go through the dry mouth period when I get back on, but it's worth if for me.

                      I've never heard of those other drugs. I hope it works for you.
                      Hi, for me, the dry mouth hasn't gone away. I take 8mg of Detrol LA and I don't get any relief.
                      I use a saliva-replacer product spray to help cope, just in case anyone else reading this is still having problems with dry mouth. It's weird, It's definitely weird. But it helps. They have a gel as well.
                      21 years old
                      dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

                      ♥ looking for a way or medication to help stop spasms ♥

                      Comment


                      • #12
                        Hi, again, Holly ~ I'm really not certain what's the most helpful. I know I've seen dramatic help as a result of using all the meds and tips (like my beloved rice bag heated). Yesterday I was in horrific pain when I got to the doc for my instill (I never cry any more and yesterday it brought me to tears once again). After the instill everything seemed to calm a bit, but still had to "go" before we reached home (about 40 miles). I have noticed the valium suppositories help relax the spasms so I'm trying that this time without the PT to see.

                        The diet is probably one of the biggest helps for me. I tend to get a little sloppy when I feel good now and that's when I start going backwards. I was so faithful to the diet during that first year and I don't know why I'm so darned hard headed. I just keep slipping into denial over and over again. (I was so healthy before all this and it's hard to believe I'm plaqued with this beast at such a late time in my life - I'm 62 yo) My hubby is precious and keeps trying to remind me with what I might be doing wrong....I really need to listen to him!

                        I absolutely have immediate problems if I drink too much of ANYTHING, even water, too quickly. It will drive my bladder crazy for hours.

                        Hope you get some good advice that works for you! Have a better day!
                        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

                        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
                        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
                        8/2010 Surg gallbladder
                        TREATMENTS (updated 4/15)
                        IC Diet since 8/2009 (Able to vary 4/15)
                        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
                        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
                        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
                        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
                        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
                        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

                        Comment


                        • #13
                          I am so glad to have these forums. I felt so alone before I joined years ago. I too have the issues with diet. Once I start feeling good, I slip and then it starts again. I got this in about the year 2000 and had a few really good years from about 2004 to 2008. I am hoping some day to stop hurting so much again.

                          Comment


                          • #14
                            Keep in mind that there are treatments that can help bring symptoms to a more manageable level, but elimination of symptoms is difficult and does not happen for most. I think this forum is misleading in that respect. I know for me when I first started coming here I was convinced if I could just eliminate all triggers I would be symptom free. I was really strict on diet for six months and began using a journal to track my life and my experience with IC. I've found out my condition waxes and wanes on it's own. I've come to mostly accept that. There are plenty of other conditions people live with and continue their life inspite of them. My symptoms are somewhat controlled, but could be better. I'm not good with the diet either. To me it's way to restrictive, especially when it comes to drinks. I'm not able to just drink water, but that's me. I see IC as any other chronic condition. Take chronic back pain for instance. Pretty much everything will exacerbate the symptoms. So do you just do nothing because everything is a problem. I hope not, it would be a challenge but one must still live. Perhaps walking to far might cause increased symptoms, but you really want to go to the fair with friends. Is the trade off worth it. I'd say yes, because you need to keep doing what makes life liveable. To me the diet for IC is no different. Some foods and beverages do exacerbate symptoms for me sometimes. Othertimes they don't. I just never know. For me i"ve decided to do what I want and let the whole bladder do what it wants. I accept it's going to be grouchy some days and better other days. That's how it is for me and probably many. Someday they will have better treatments but until then I live each day as it comes and try to be grateful for the many gifts in my life. IC isn't the best thing to live with, but there are worse things out there. Good luck.
                            What helps
                            Elmiron 200 mg bid
                            Wellbutrin XL anxiety and depression
                            Oxybutynin ER 10 mg
                            Yoga


                            tried and failed
                            Cardura, Hytrin, Flomax, Prosed DS, Vesicare, Pyridium, Cystoprotek (caused GI problems), Lyrica, Pamelor

                            "We can't wait until the storm is over. We need to learn to dance in the rain."

                            Comment


                            • #15
                              What you say is very much like I feel, except I don't think the forums are misleading. They do help me. I do accept the fact that I probably never will figure out the ebb and flow of IC. I go on trips and work in spite of how I feel. It's just frustrating as I'm sure you know.

                              Comment

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