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  • Here is my IC story....

    Hi there, i got diagnosed with IC only a few weeks ago. but I am having the pain since November 05. In Fact I have been having bladder infections since i have been 16 and i am 29 now. It started when i went to Canada ( i traveled a lot since 1999) This was the first time i was with my boyfriend all the time as we started living together ( he is Australian and i am German )Of course the first week i had a bladder infection. but this time it was painful. I used to have a lot of UTI's but never the typical pain. This time i thought i am going to die on the toilet. i got antibiotics of course. Took that for 7 days. Did not help. Antibiotics again...( still bacteria in urin ) took that 10 days. Did not help. Freaked out of pain. Stabbing pain while urinating and after in my urethra..couldnt walk or sit...only cried....
    Got IV of Antibiotics..made me sick. Did not help. Went to Urologist ..got my urethra stretched. Felt better for around 3 monhts. Took Macrobid for 6 weeks in between that time. After 3 months same thing..pain like crazy in urethra burning like hell. This was the first time without bacterial!!!Urin looked fine! Got another urethra stretch. Did not help this time. Walked around with that pain from Nov05-Aug06. Pain was there most of the times just cried a lot...but i had good days in between...which felt like heaven.
    Frequency was high. August i went on vacation to Germany, saw my urologist..he widened my urethra in a surgery..Did not help. went to IC specialist. He said that i 'only' have Vulvodynia. He did not think that i have IC. He was very nice though. It is hard to do a treatment in between travels. He said that i could do Elmiron Installations. Did not really think much more about it...as i wasnt sure how to manage all this together. Moved to Scotland. Had this horrible wound feeling down there...like a baby rash but there wasnt any rash. Only this horrible burning and stabbing while and after peeing. December 06 another bacterial infection with blood in urin. Very scary. went to the smart doctors here in England....well sorry...i did not even see a doctor..only a nurse gave me an antibiotics..again.
    January 07 bladder distension. Blood in bladder. Doctor not quite sure but think is IC. February to April 2nd 07 i had NO Pain at all!!! No wound feeling or stabbing! I was able to hold my pee for at least 3 hours! Now...pain is back since beginning of April...Tried Cranberry...bladder killer!!! Was bad.
    Taking Uro Vaxom. Hopefully that will help. Taking it since 3 weeks...still pain.
    Sex not always possible. I decide when!
    Sometimes cant even sit or walk. On April 3rd i went to a specialist in Germany ( different one ) Very nice doctor, very understandable. Someone who understands! He made the KCL Test and yep...it was positive. I have IC..Welcome to the club!
    HAd to go back to england ( where i live till July) wanted to start bladder installations but only to talk to a doctor would cost me 300 US$. So next week i will go back to my urologist in germany and he will show me how to self catherize. I am so glad i have this urologist . he is super friendly doctor and even if he is not specialist in IC he tries everything to help me!!! I will go and see the IC Specialist again in July to get another Bladder distension.
    I will hopefully start my installations next week. I hope they will work. I will be moving to Australia permantely in September and i heard that they are not that far with IC...i am a bit scared of that. I will get my installations shipped over from Germany...oh dear...what a complicated life....But hey, i have a wonderful boyfriend who supports me 100% and totally understands and this is all what counts. Also my family has been so caring and awesome. With all that love i have to fight this illness!!! And you do too......

    Medication so far:
    uro Vaxom
    Detrol
    Cantharis
    Cranberry
    Basica ( something like Prelief...not as good..cant get Prelief here)

    Started Ic diet...its hard but possible....

    Guys...keep your heads up. I am so glad i found this website...i felt so lost especially here in England...Doctors dont even know what IC is.
    It is hard to stick to the diet but i will have to try....i miss my Nutella!!! I am a chocolate freak and i love yogurts...oh dear....
    Please , please stay in touch and let me know any of your worries or successes....
    Anja from Germany....

    Symptoms started November 2005
    Diagnosed with IC in January 2007
    Diagnosed with Vulvodynia 2006
    Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
    Vitamins/Minerals: Neutra C

    Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex



  • #2
    Hey Hon
    Cranberry's are a major no no ! Get off them .They are high in acid that will make your bladder worse.Good luck.
    Hugs Sandra
    Last edited by sandramac; 04-25-2007, 11:51 AM.
    "Never Give Up."

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    • #3
      HI! I'm glad you have a very supportive b/f and family.....that helps with IC!
      I agree with Sandramac.......throw out those Cranberry pills. They are for those with UTI's who DON'T have IC.
      There's a few people here on the site who live in Austrialia...Hollyd being one of them. You might PM her and chat with her. I know she has lots of problems getting meds over there.
      You might talk to your dr. about Elavil.....it works great for frequency and pain.....it's a prescription.
      I can eat Dannon's low fat/low sugar yogert with out any problem......I have it every morning for breakfast.
      I wish you luck.....living with IC isn't easy.....but it easier if you stick to the diet. Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        Hey,

        first of all welcome to the boards, you have come to right place for information and support. do not do cranberrry its like dropping acid onto your bladder!!! I am from Melbourne Australia, where abouts in Australia are you going to be living? You can PM anytime.

        take care
        Formerly lorenab

        Comment


        • #5
          Oh, honey, I miss my nutella too! You can get it in the US, but it's not a big thing here. The good news is, after succesful treatment over a period of time, you may be able to have it again -- in moderation.

          I'm really impressed that you've been able to get as far as you have, with all the traveling you've been doing! What great spirit and determination! With those qualities, and the doctor in Germany who is willing to work with you, I'll bet that you will find your way to successful treatment.

          Good luck. I'll be interested to hear how things work out for the rest of your time in England, and when you get to Australia. Stick around, ok?
          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


          • #6
            Hi Anja,

            I hope Uropl helps you. I receive treatments since last year and my IC has improved - not dramatically, but slowly.....how often do you get it to start with? Oder besser: wie oft wöchentlich hintereinander wirst Du es bekommmen?

            Grüße, Christina
            I'm german, diagnosed september 2005 with mild IC. Current meds: Elmiron, Uropol-S, IC diet.

            Comment


            • #7
              Not alone anymore....

              Thank you guys...i was so happy to see all your replies. I had tears in my eyes because i did not feel alone anymore. Thanks for that.
              Well yeah..i did stop the cranberries. You are right..its is killing my bladder.
              I am a bit scared to self catherize but this will be my only choice at the moment. I only have 2 days in Germany to learn it..than i will go back here to England and will be on my own...I hope Uropol will help me. It costs so much . I will have to pay it all myself. Does anyone know how long it takes until it works? What is the MSM gel ? Not sure if we get that here...
              I tried soooo many cremes and gels. At the moment i only use Bepanthen and Hydrafemme gel. My vulva skin is very thin..so any irritation makes it feel like fire. So i put crazy amounts of cremes on it..which isnt good either.
              The weird thing is that i never really know what actually just helped me because i take 3 things at once out of panic for pain.
              I really hope that i will find help in Australia....my mom will be trying to shipp the Uropol over every months..not sure if that will be working.....
              Anyone knows where else i can get Prelief?

              Hope to talk to you all soon!!!

              Symptoms started November 2005
              Diagnosed with IC in January 2007
              Diagnosed with Vulvodynia 2006
              Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
              Vitamins/Minerals: Neutra C

              Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


              Comment


              • #8
                Hallo Christina...
                wow its nice to see someone from Germany. How long did it take until you felt relieve from Uropol? Do you have to pay it urself? What are your symptoms? Where in Germany are you from??
                Are you doing the installations yourself? Do you think it is worth it to try Uropol? Will take it once a week for 4 weeks and then monhtly. Is that enough like that or do i have to take it more often???

                Talk to you soon....tschuess.....

                Symptoms started November 2005
                Diagnosed with IC in January 2007
                Diagnosed with Vulvodynia 2006
                Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
                Vitamins/Minerals: Neutra C

                Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


                Comment


                • #9
                  Hi Anja,

                  Prelief can be shipped to the UK - i get it this way....I order it via amazon.com

                  It took me some month to feel better. But I know some patients who felt better quite quickly. You may want to visist www.ic-forum.de and ask for more information. Uropol ist dicussed quite often, as we have problems with our health insurance system over here. We are a s small community but I think we've got most of the knowledge together about how to treat IC in germany.

                  I think Uropol is one of the best instillations available. Cystistat is equally as good, (hyaloronsäure) but more expensive. Most important thing is patience. Don't give up on Uropol if you don't feel better immediately. (Ich nenne das immer den IC Dreisprung: Information, Hoffnung und Geduld...)

                  4 times once a week and the monthly is the standard. I don't do it myself I drive once a month to the Urologische Poliklinik Mainz.

                  My IC is quite mild. I only take a heating pads for discomfort / very mild pain. My frequence is no too high to bother me and I sleep through the night. But I was treated VERY early with Elmiron AND Uropol. Of course I still wish I wouldn't feel may bladder al the time and go into remission...
                  I'm german, diagnosed september 2005 with mild IC. Current meds: Elmiron, Uropol-S, IC diet.

                  Comment


                  • #10
                    Hey there, thank you so much. I will check out Amazon for Prelief. Yeah i will for sure stay patient with Uropol. I just hope i will be able to get it shipped to Australia! Where are you from in Germany? Does Elmiron help you? Do you suffer from Hairloss? Isnt that the main side effect?

                    Bis Bald....

                    Symptoms started November 2005
                    Diagnosed with IC in January 2007
                    Diagnosed with Vulvodynia 2006
                    Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
                    Vitamins/Minerals: Neutra C

                    Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


                    Comment


                    • #11
                      Cystoprotek, Prelief

                      Hey guys, do you have any good experiences with either Cystoprotek or Prelief ?

                      Symptoms started November 2005
                      Diagnosed with IC in January 2007
                      Diagnosed with Vulvodynia 2006
                      Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
                      Vitamins/Minerals: Neutra C

                      Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


                      Comment


                      • #12
                        Hi Anja,

                        I just remembered that I got the Prelief from a friend who brought it over, but the cystoprotek I got shipped to the UK....but I think I jzst din't want to pay the shipping costs hm....

                        Elmiron gives me a bit of hairloss, but not enough to be really worried or stop it. As I receive both treatments I cant' tell which is helping me more. As the symptoms are coming and going I sometimes don't know if it's due to eating something wrong or trying to go without medication LOL.

                        Maybe you want to check into the german forum as well, my german is much better than my english

                        Btw maybe you can PM me the name of your doctor - we collect all doctors with IC knowledge in a database...

                        Schönen Abend nach England und grüße aus der Apfelweinstadt am Main,
                        Christina
                        I'm german, diagnosed september 2005 with mild IC. Current meds: Elmiron, Uropol-S, IC diet.

                        Comment


                        • #13
                          Ohhh to have Nutella again.

                          Comment


                          • #14
                            Ph balance

                            Hiya,
                            does anyone know when exactly my urin is to acidy? I have those tests at home where i pee on this peace of paper and it tells me how acidy my urin is. But for some reason i am not sure what is normal and what not...
                            Maybe you guys know?

                            Hugs
                            ANJA

                            Symptoms started November 2005
                            Diagnosed with IC in January 2007
                            Diagnosed with Vulvodynia 2006
                            Medications since July 2007: Gepan Installations now only every 2 months - Amitriptilyn(Elavil) 6 drops at night - Elmiron 200mg/day, Ranitic150 in the morning together with Desloratodine 5mg - Guaifenesin Capsules 300mg (for vulvodynia), Prelief with critical food
                            Vitamins/Minerals: Neutra C

                            Herbal Tea (Chamomille) 3 cups a day, sit baths with sea salt after sex - Hyalofemme Gel before sex - Multi GynActi Gel after sex - Macrobid 50mg after sex


                            Comment


                            • #15
                              Hi Anja,
                              You might want to ask your doctor about Amitriptyline (called Elavil here in the US). It's one of the most effective medicines for IC & you can tell a difference within only a few weeks. It's especially good for helping sleep & frequency, but it reduces pain as well. It's prescribed for IC and vulvodynia, so you may get better on both accounts! I'm so sorry about your IC diagnosis, but you are on the right track, learning to be your own advocate & seeking out treatments.

                              I was very sick when I got IC, but with treatments, diet & hard work, most days now I feel pretty good, work full time & lead a pretty active life. Hang in there, the hardest part is the beginning, then it gets better.

                              Sending a warm welcome & wishing you better days soon--
                              Kadi

                              -------------------------------------------------------------
                              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                              ------------------------------------------------------


                              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                              Source - Pinterest
                              "


                              Current treatments:
                              -IC diet
                              -Elavil 50mg at night
                              -Continuous use birth control pills (4-5 periods/year)
                              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                              -Pyridium if needed,
                              -Pain medicine at bedtime daily, as needed during the day several times per week
                              -Antibiotic when doing an instillation to prevent UTI
                              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                              -Dye Free Benadryl 50 mg at bedtime
                              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                              -Managing stress= VERY important!
                              -Fur therapy: Hugging the cat!

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