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  • Suggestions Please!!! Thank you!!!

    Hi There!

    My name is Zoe, I am so glad to have found this forum!

    I was looking for any help or suggestions please!!!

    I am 28 years of age and from the age of 18 (i think due to: 1. it's somewhat hereditary from my Mum 2.the start of being sexually active and 3. Not being allowed to regularly go to the toilet in a job I had) I have had to take Ural (a urinary alkaliser here in Australia) every day in the morning and if I do not, by the afternoon I end up with severe pain, stinging, urgency etc etc- which leads to an infection by the following day needing antibiotics. I have tried all natural remedies and continue to use them but with no permanent fix. As far as medical goes, I went to a specialist when I was 19 and had the operation where they investigate the area but he found no fixable problem and sent me on my way. I have since been to a second urologist who did no investigation but gave me low grade antibiotics to take every day and they helped while I was on them but then i was back to the same problem as soon as I came off them. I do have Vulvodynia, which I manage reasonably successfully but this urinary tract problem still plagues me and I would just LOVE to be free of it!! I do also get frequent urinary tract infections regardless of taking the ural everyday and need to do a big flush with a tea tree oil solution everytime after having sex to help avoid the UTIs.

    If there any any suggestions of what it could be or more testing I could ask for or similar experiences, please share!

    Thank you very very much for your time and consideration!

    Warm Regards, Zoe
    Brisbane, Australia

  • #2
    You are not alone. So many of us here all have similar stories to share. What have you tried so far? Do anything help at all?
    Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

    Had a UTI in Oct 2009
    IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

    Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

    Diagnosed fibromyalgia/lyme disease in 1999
    Acid reflux since 1998

    Have tried the following therapies:
    pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
    Ativan-helps some
    Vicodin-some relief.
    ditropan-only caused fluid retention
    toviaz-same as abovee
    detrol-no relief
    hydroxyzine-get some relief but not for urgency
    valium-helps relax the muscles
    flexeril-same as the valium
    B&O suppositories-they help a little
    started estrogen cream
    starting effexor soon

    Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

    current meds and treatment:
    nexium
    ativan
    valium suppositories
    hydroxyzine
    IC diet
    methenamine mandalate
    estrogen cream
    effexor
    B&O suppositories

    Had bladder instills but this made the urethra spasms much worse.

    Had hernia repair with fundoplication dec, 2011

    Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

    Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

    Husband is my biggest supporter. I need the urgency to go away. What helps??

    Comment


    • #3
      I think it would be a good idea for you to see another urologist --- or go back to one you have seen before. Sometimes it takes a while to be diagnosed.

      Another thing you can do is to give the IC diet a try. You'll find a link to the latest food list in my signature below.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Reply:

        I'm 18 now, and have been suffering with IC since I can remember. I would definitely try to get established with a urologist and keep seeing him regularly - the goal is to find some kind of treatment that allows you to stay healthy and symptom-free, which is better than taking antibiotics or supplements every day. As another poster said, please let us know what you have tried so far -



        Molly
        Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

        Medical research addict.

        Likes: hot baths and naps with cats

        Comment


        • #5
          Hi Zoe!

          Glad you found this forum. I think Donna's suggestion to try the IC diet is a good one. Do you drink lots of water?

          I have a question regarding your vulvodynia. You said you manage it successfully. Could you please share with us how you do that?

          Thanks!

          Suzi

          Comment


          • #6
            Hi Zoe

            What part of Aus are you from. I would also like to know how you manage your Vulvodynia?! I hate mine

            Ural if you didn't know is lime flavoured. I read that and stay well away after my first one, I stick to bicarb soda now.. If you let me know where you live I can talk to my specialist and see if they know any good uros in your area. I know they are so hard to find here in Aus.

            Claire
            TMJ Dysfunction 2009
            Vulvodynia and/or PFD 2010
            IC, based on symptoms alone 2010.
            PCOS March 2012

            8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

            Currently using: IC Diet...pain meds as needed
            Medications / treatment tried and discounted:
            Fluconazole 150mg 1 per week for 6 months (yeast)
            Endep 25mg - 4months
            Lyrica 75mg - 2 months - FLARE
            Oxytrol patch - I think this caused retention.
            Countless creams, lotions and potions.
            Cystoprotek - no change in symptoms
            PT - for 1 year
            Various herbs and supplements

            Comment


            • #7
              Thank you!

              Hi lovely ladies,

              Thank you SOO much for your replies!!! I am so sorry i have not replied- no emails came through to my inbox, so i thought that no-one had written back.

              Re the Vulvodynia- I saw a gentlemen named Marek Jantos, if you google his name a website will come up- he is in Adelaide and was also seeing patients in Sydney- I am not sure if he is doing this anymore, but if you ring him, he will surely be able to lead you to someone near to you. He does biofeedback amoungst a lot of other things (and I think his treatments have advanced aignificantly since I saw him in 2004) and that was successful for me- it flared things for a while at the start but ended up helping a lot, also just stretching the area- (sounds delightful i know) but now to stop myself from getting it, I need to stretch (i.e. insert my fingers and push against the walls- (i told you- delightful)) This stops the pain and relaxes the muscles, sometimes it can result in a flare but it is only temporary. using only cotton tampons, cotton undies etc helps as well.

              I will definitely try the diet and i didn't know that Ural contained lime- i will totally get onto Bi-carb- THANK YOU!

              Please tell me of any Uros in the area I am from Brisbane and know how hard it is to find someone -so am happy to travel!!

              I do drink lots of water - thank you. Slowly and warm water, so it doesn't flush the toxins too quickly through my kidneys.

              What i wrote in my first post was all that I have tried, I have had other health problems and they have had to be my focus first but this is the original one and the hardest to kick!!!! (I'll write them down the bottom)

              I am a Visceral Manipulation/Craniosacral Therapist and love my work and am always looking for new things to help my beautiful clients but I cannot help my IC clients with the techniques I use and need more knowledge than what I have, so for that also- a great Uro would be amazing (I'm sure they exist but they seem to be the pot of gold at the end of the rainbow!). and first and foremost I would love to have it out of my life!!!!!!!!!!!!

              I worry also - i would like to have babies at some stage in the next coupla years and I wonder if it effects the development of the foetus by taking Ural/Bi-carb and occasionally Keflex. Otherwise i have no other way of functioning.

              Also has anyone heard of D-Mannose and whether it works or not?

              Thanks all so much for your time and beautiful words of support!

              Kind regards, Zoe
              10/12/82

              *TMJ since 21 - managed with Craniosacral therapy and Finch Therapy.
              *Abdominal Dysfunctions from undiagnosed Celiac Disease, had emergency laparotomy in late 2000. Went Gluten free but still had severe abdominal problems, only helped by Visceral manipulation. Found it was Adhesions from the surgery finally in 2010 and need to hang upside down for 20mins 3 times a day for a couple of days and rub stomach firmly in a clockwise direction until the pain goes. Sounds crazy- but it works and it's very practical as it's the only way to help organ function that is effected by adhesions in the surrounding fascia. Get rid of gravity/it's current motion that it is stuck in and stretch the fascia! Recommended to try for anyone that has had any type of surgery and are experiencing pain as a result (even if the pain is not in the same area, it can be due to dysfunctional fascia that is connected and referring the pain)
              *Vulvodynia since 2002, managed by visiting Marek Jantos and using biofeedback.
              *Recurring bladder infections since early 2000 (treated with Keflex) & Pain leading to Infections on a daily basis unless managed by Ural/Cranberry- would love to solve this one!!!!

              Comment


              • #8
                Hang in there hon. Does the diet help you at all?
                Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

                Had a UTI in Oct 2009
                IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

                Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

                Diagnosed fibromyalgia/lyme disease in 1999
                Acid reflux since 1998

                Have tried the following therapies:
                pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
                Ativan-helps some
                Vicodin-some relief.
                ditropan-only caused fluid retention
                toviaz-same as abovee
                detrol-no relief
                hydroxyzine-get some relief but not for urgency
                valium-helps relax the muscles
                flexeril-same as the valium
                B&O suppositories-they help a little
                started estrogen cream
                starting effexor soon

                Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

                current meds and treatment:
                nexium
                ativan
                valium suppositories
                hydroxyzine
                IC diet
                methenamine mandalate
                estrogen cream
                effexor
                B&O suppositories

                Had bladder instills but this made the urethra spasms much worse.

                Had hernia repair with fundoplication dec, 2011

                Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

                Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

                Husband is my biggest supporter. I need the urgency to go away. What helps??

                Comment


                • #9
                  Thanks Nancy! I just looked at it and it is the diet I keep already! So that's quite cool, it's certainly kept my body healthy for the last couple of years, my diet is incredibly good, it's one thing I'm strick with after all the abdominal probs- only occassionally having a splurge- I certainly notice the difference when i do!

                  I do also take a lot of supplements made for me by biochemist which keep me very healthy and have had less frequent full blown infections since being on it.

                  Thanks again!!!

                  Comment


                  • #10
                    Marek Jantos

                    Originally posted by zoep View Post
                    Hi lovely ladies,

                    Thank you SOO much for your replies!!! I am so sorry i have not replied- no emails came through to my inbox, so i thought that no-one had written back.

                    Re the Vulvodynia- I saw a gentlemen named Marek Jantos, if you google his name a website will come up- he is in Adelaide and was also seeing patients in Sydney- I am not sure if he is doing this anymore, but if you ring him, he will surely be able to lead you to someone near to you. He does biofeedback amoungst a lot of other things (and I think his treatments have advanced aignificantly since I saw him in 2004) and that was successful for me- it flared things for a while at the start but ended up helping a lot, also just stretching the area- (sounds delightful i know) but now to stop myself from getting it, I need to stretch (i.e. insert my fingers and push against the walls- (i told you- delightful)) This stops the pain and relaxes the muscles, sometimes it can result in a flare but it is only temporary. using only cotton tampons, cotton undies etc helps as well.

                    I will definitely try the diet and i didn't know that Ural contained lime- i will totally get onto Bi-carb- THANK YOU!

                    Please tell me of any Uros in the area I am from Brisbane and know how hard it is to find someone -so am happy to travel!!

                    I do drink lots of water - thank you. Slowly and warm water, so it doesn't flush the toxins too quickly through my kidneys.

                    What i wrote in my first post was all that I have tried, I have had other health problems and they have had to be my focus first but this is the original one and the hardest to kick!!!! (I'll write them down the bottom)

                    I am a Visceral Manipulation/Craniosacral Therapist and love my work and am always looking for new things to help my beautiful clients but I cannot help my IC clients with the techniques I use and need more knowledge than what I have, so for that also- a great Uro would be amazing (I'm sure they exist but they seem to be the pot of gold at the end of the rainbow!). and first and foremost I would love to have it out of my life!!!!!!!!!!!!

                    I worry also - i would like to have babies at some stage in the next coupla years and I wonder if it effects the development of the foetus by taking Ural/Bi-carb and occasionally Keflex. Otherwise i have no other way of functioning.

                    Also has anyone heard of D-Mannose and whether it works or not?

                    Thanks all so much for your time and beautiful words of support!

                    Kind regards, Zoe
                    10/12/82

                    *TMJ since 21 - managed with Craniosacral therapy and Finch Therapy.
                    *Abdominal Dysfunctions from undiagnosed Celiac Disease, had emergency laparotomy in late 2000. Went Gluten free but still had severe abdominal problems, only helped by Visceral manipulation. Found it was Adhesions from the surgery finally in 2010 and need to hang upside down for 20mins 3 times a day for a couple of days and rub stomach firmly in a clockwise direction until the pain goes. Sounds crazy- but it works and it's very practical as it's the only way to help organ function that is effected by adhesions in the surrounding fascia. Get rid of gravity/it's current motion that it is stuck in and stretch the fascia! Recommended to try for anyone that has had any type of surgery and are experiencing pain as a result (even if the pain is not in the same area, it can be due to dysfunctional fascia that is connected and referring the pain)
                    *Vulvodynia since 2002, managed by visiting Marek Jantos and using biofeedback.
                    *Recurring bladder infections since early 2000 (treated with Keflex) & Pain leading to Infections on a daily basis unless managed by Ural/Cranberry- would love to solve this one!!!!
                    Hi Zoe,

                    I saw Marek too! I saw him from oct 2010 to April 2011 and went for intensive therapy in Adelaide with him. By the end of intensive therapy I felt 75% better, as soon as I sat on the plane though, it all came back!!!!!. It seems though that the trigger point work and stretching just make me burn more, it helped when he was doing in twice a day for 4 days but I attribute that to the lidocane used afterwards. I from day 1 of therapy have always had a flare up of burning after the sessions, I thought it was normal until I stopped, now I don't get burning and I don't do the trigger point work, or stretching and my daily pain is better off for it. Its more of a rawness which is way less intense than the burning.

                    I occasionally get the burning with sex now, where as before it was unbearable. . I also get a hot feeling when removing the dilator. Did you have any of these troubles? In short Marek helped with the sex pain (I think this is only because I can now relax the muscles) but daily pain is unchanged even when I relax the muscles. And I don’t think sex will ever feel like it did prior to all this.

                    The diet has been amazing for my urgency and frequency and stabby bladder pain. It is a MUST! and be strict

                    Claire
                    Last edited by Claire_A; 10-20-2011, 03:54 PM.
                    TMJ Dysfunction 2009
                    Vulvodynia and/or PFD 2010
                    IC, based on symptoms alone 2010.
                    PCOS March 2012

                    8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

                    Currently using: IC Diet...pain meds as needed
                    Medications / treatment tried and discounted:
                    Fluconazole 150mg 1 per week for 6 months (yeast)
                    Endep 25mg - 4months
                    Lyrica 75mg - 2 months - FLARE
                    Oxytrol patch - I think this caused retention.
                    Countless creams, lotions and potions.
                    Cystoprotek - no change in symptoms
                    PT - for 1 year
                    Various herbs and supplements

                    Comment

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