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  • I do have IC

    Hi,
    I was just diagnosed with IC. I was diagnosed with stage 4 endometriosis in april 2009 and in sept. 2009 I had my hysterectomy with both ovaries gone due to the endometriosis. In recovery after my hyster I started having horrible problems with feeling like I had a UTI. I had always had the frequency and pain if I held it to long. I ended up in the ER once on a weekend and they tried to cath me to get a clean catch. I screamed and bawled and they finally gave up. I left after I proved I could still pee and was sent to the PCP. She got me in with a urologist who did a cystocopy. It came up clean but when he did the urodynamics I wasn't definitely not emptying my bladder all the way. He says not to worry about it and to just take more time to pee. what? So I figured that was as good as it was going to get until my surgery 2 weeks ago. I went to an endometriosis specialist who is also a gynurologogist. She said it sounded like IC and did a partial hydrodistention. She also found some kind of bladder defect which she fixed and then did only a partial hydrodistention and saw IC. So my post op is next week and we are discussing bladder installations etc. If catheters hurt me that much how do I get a bladder installation? I admit I'm pretty concerned about it

    Currently I am on:
    Hyophen
    hydroxzine
    Tramadol
    Flexeral
    Diagnosed April 2009 with stage IV endometriosis
    Hysterectomy 2009 - lost both ovaries to endo
    Dx with IC sept 6th, 2010

    Current Meds:
    Zyrtec
    Flonase
    Hydroxzine
    Albuterol
    Atrovent
    Tramadol
    Ranitidine
    Protonix
    Hyophen

  • #2
    Note from ICNDonna: The following are only suggestions --- what works for another IC patient may not work at all for you.



    1. try Elmiron. this is like lotion for your bladder
    2. Add amitryptilline.25 to 50 mg. This will block the pain signal that goes from bladder to brain
    3. Add ranitidine 300mg daily. This is an H2 blocker and stops the degranulation of mast cells that causes the pain.It is commonly used for heartburn and can be obtained over the counter.
    4. Follow the ic diet carefully
    5. Do vaginal stretching and pelvic physical therapy.. You can find some great books for this on this web site.
    6. Get some narcotic pain medication for severe pain
    7. Do all the above and then be patient.. YOU WILL GET BETTER BUT IT WILL TAKE TIME!
    Last edited by ICNDonna; 09-22-2011, 02:33 AM.

    Comment


    • #3
      I'm on ranitidine and pantoprazole already for stomach issues, and zyrtec, hydroxizine and flonase and my night stand looks like an old lady lives in my house. I have two drawers of medicine that I take. Its kind of frustrating, but If I could find one that worked it would be awesome! My doctor did give me tramadol for pain and flexeral for the pelvic spasms. I can't take amytriptiline. I was on it for six months after my hysterectomy and it was awful. I'm really scared of the bladder installations though which is what she wants to do. Anything down there is unbelievably painful!!
      Diagnosed April 2009 with stage IV endometriosis
      Hysterectomy 2009 - lost both ovaries to endo
      Dx with IC sept 6th, 2010

      Current Meds:
      Zyrtec
      Flonase
      Hydroxzine
      Albuterol
      Atrovent
      Tramadol
      Ranitidine
      Protonix
      Hyophen

      Comment


      • #4
        Omaklackey, I personally do the bladder instills & will tell ya the first couple times my urethra hated me!!! Maybe your Gyno/Uro might perscribe you a topical lidocaine to numb the area before insertion. Couldn't hurt to ask.
        I would say that after several months of self-catherization, it does get easier and only takes me 5mins to complete the whole process, pain-free.

        I hope you find relief.
        ~Ashley
        Diagnosed with IC, IBS-D, & Bulging disk on L5
        Possible PFD, CFS, Fibromyalgia, VV, & Arthritis
        Currently taking:
        -Quercetin (twice a day)
        -D-Mannose (daily)
        -Calcium supplements (daily)
        -Cystex (as needed)
        -Lysene [mouth ulcers - genetic] (as needed)
        No longer taking:
        -CystaQ (too expensive)
        -Cystoprotek (flares worsened)
        -NuvaRing (irritated my womanly walls)
        -Lexapro (didn't work for me)
        -Effexor 37.5mg
        -Rescue Instills: 8ml Heparin, 8ml Lidocaine, 3ml Sodium Bicarbonate
        -Xanax
        -Uribel
        -Desert Harvest Aloe Vera Personal Gele

        Comment


        • #5
          Is there a thread or something that gives good ideas for what to ask, etc at my appointment? Any advice would be appreciated?
          Diagnosed April 2009 with stage IV endometriosis
          Hysterectomy 2009 - lost both ovaries to endo
          Dx with IC sept 6th, 2010

          Current Meds:
          Zyrtec
          Flonase
          Hydroxzine
          Albuterol
          Atrovent
          Tramadol
          Ranitidine
          Protonix
          Hyophen

          Comment


          • #6
            New to IC

            You will get better it just takes TIME and that is the hardest part.
            Blessings,
            Ruth

            Comment


            • #7
              Originally posted by Omaklackey View Post
              I'm on ranitidine and pantoprazole already for stomach issues, and zyrtec, hydroxizine and flonase and my night stand looks like an old lady lives in my house. I have two drawers of medicine that I take. Its kind of frustrating, but If I could find one that worked it would be awesome! My doctor did give me tramadol for pain and flexeral for the pelvic spasms. I can't take amytriptiline. I was on it for six months after my hysterectomy and it was awful. I'm really scared of the bladder installations though which is what she wants to do. Anything down there is unbelievably painful!!
              Oh my gosh. I cracked up laughing when I read the first sentence of this post. Not that there's a defining "old" age...but as for me...I have so much medicine in my closet it looks like I'm on death's door. LOL... Sorry...have to chuckle about these things once in a while.

              Omacklacky...I agree with the suggestions Barbm gave. Perhaps writing some of those things down that she suggested would be useful. If you are not emptying your bladder you might need some PT to help with the muscles surrounding the bladder areas. When they are tight/constricted (from stress, etc...) they can cause issues with emptying the bladder. I have that issue and am in PT. (of course you may have different issues but it wouldn't hurt to ask)

              I hope things get better for you.
              Frances

              Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

              Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

              Other conditions: Migraines, allergies, mild IBS.


              "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

              Comment


              • #8
                Dr. Mosbrucker does want me to get PPT but I would have to pay for it myself and the nearest one is 2 hours away. I haven't decided how to do that...
                And She also suggested coming here for help. I have been making a list about things to ask. I also have a notebook I bring with me every where with all of my issues/charts/notes etc. I was wondering if there was a thread with things to ask though?
                Diagnosed April 2009 with stage IV endometriosis
                Hysterectomy 2009 - lost both ovaries to endo
                Dx with IC sept 6th, 2010

                Current Meds:
                Zyrtec
                Flonase
                Hydroxzine
                Albuterol
                Atrovent
                Tramadol
                Ranitidine
                Protonix
                Hyophen

                Comment


                • #9
                  Maybe someone here's knows of a thread.

                  That stinks that PT is 2 hours away. There's no other option??? You might consider it twice a month if you can afford it. You could at least get the exercises and tips from the PT.

                  Hope you get other answers.
                  Frances

                  Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

                  Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

                  Other conditions: Migraines, allergies, mild IBS.


                  "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

                  Comment


                  • #10
                    I am so sorry you have been having problems with endo and IC. I don't do well with catheters myself, so I would be just as nervous as you. Hopefully, they can use lidocaine on the catheter...

                    The good news is, as people have already said, you CAN and WILL get better eventually.........Sending you understanding hugs.....
                    Julie Beyer, MA, RDN
                    IC Dietitian, Patient Advocate, Speaker, & Author


                    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                    ........ ........


                    Other IC Diet Resources:

                    IC Diet Webinar
                    IC Diet Website
                    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                    Free IC Diet Booklet: What Can I Eat?
                    Confident Choices IC Diet Blog
                    IC Diet Newsletter


                    *Let's Connect!*

                    Comment


                    • #11
                      Omaklackey, Buy the book "Ending female pain" by Isa Herrera. You can do the therapy at home.You can buy from here.

                      Comment


                      • #12
                        Thanks for the suggestion BarbM, I will definitely order that one! I had a good appointment today. I did get my first instill and I was shaking like a leaf by the time she did it because I was so terrified of the pain. It wasn't super bad, but doing it myself should be... interesting! The used a ped cath, and ordered an even smaller one for me. My Urethra is major sensitive and It hurt like fire when I finally peed out the instill an hour and a half later. We are staying at my mom's for the next few days. I'm not sure I'm brave enough to try the instills here. I may wait until I'm home. Kind of an awkward thing to do 1st time, NOT in my own home. Dr. Mosbrucker is so awesome. She asked me how I was doing, and how my pain was and how many dilatid I had left and gave some suggestions about the bowel issues I've had and then she left and came back in and says: "you should have more Dilatatid, you don't realize how much work we did, you need it" and handed me a script. How cool is she!
                        Diagnosed April 2009 with stage IV endometriosis
                        Hysterectomy 2009 - lost both ovaries to endo
                        Dx with IC sept 6th, 2010

                        Current Meds:
                        Zyrtec
                        Flonase
                        Hydroxzine
                        Albuterol
                        Atrovent
                        Tramadol
                        Ranitidine
                        Protonix
                        Hyophen

                        Comment


                        • #13
                          prayer req.

                          and God is in control, thanks
                          Blessings,
                          Ruth

                          Comment


                          • #14
                            I am glad that your first instill went better than you expected. Did the instillation itself help?
                            Julie Beyer, MA, RDN
                            IC Dietitian, Patient Advocate, Speaker, & Author


                            Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                            Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                            You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                            ........ ........


                            Other IC Diet Resources:

                            IC Diet Webinar
                            IC Diet Website
                            For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                            Free IC Diet Booklet: What Can I Eat?
                            Confident Choices IC Diet Blog
                            IC Diet Newsletter


                            *Let's Connect!*

                            Comment


                            • #15
                              It sounds like you have found a very supportive doctor! That is wonderful! You will get better !!!!!

                              Comment

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