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  • Hello!

    Hi everyone, I'm Sarah, 21 from Englad and I'm new here but have been looking at your board now for a few months.

    I haven't been diagnosed with anything at the moment, I'm at the beginning of my journey into what is going on 'down there'.

    For the past year or so I've had the odd actual UTI with infection then problems with frequency up until April/May of this year. I sat my final exams with a horrendous problem with both frequency and pain. I had endless urine cultures, antibiotics etc but nothing worked. I was in agony for two whole weeks and nothing soothed me.

    Ever since then I have my urethra has been a terrible problem. I constantly feel as if there is something in there, like a drop of urine or something just sitting there. I've been sent for an ultrasound but everything was fine, no urine remained in the bladder and no problems with the bladder itself or kidneys. Sex is very painful which is... well... unhelpful whilst trying to retain a long distance relationship!

    I'm so intensely aware all the time of something just sitting there and I have no idea what to do, how to ease the pain etc. Does any of this sound familiar to anyone?

    It wasn't until during my ultrasound that IC was first mentioned, so any advice on pain medication or how to distract myself from this whilst I begin the 'what on earth is wrong with me' journey.

    But, anyway Hi and
    21, graduate & aspiring Quidditch player.



    'Poss' diagnosed Nov 11.

    Current management;

    Lots of water,
    Mefenamic Acid,
    Codeine & Paracetamol,
    Heat Pads,
    Knitting.

  • #2
    to the IC Network.

    It can take a while to make an IC diagnosis --- it also involves ruling out other possible problems. One thing you might want to try is the IC diet. If you do have IC, it can really help --- and if you don't, it won't do you any harm. You'll find the latest food list at the link in my signature below.

    Please let us know how you are doing.

    Warm hugs,
    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


    • #3
      I'm home form uni now so I shall show the diet to my mum so she can help me create something that I can do without having to eat something completely different to my family! Thankyou for the welcome It's such a relief that I'm not the only one out there!

      21, graduate & aspiring Quidditch player.



      'Poss' diagnosed Nov 11.

      Current management;

      Lots of water,
      Mefenamic Acid,
      Codeine & Paracetamol,
      Heat Pads,
      Knitting.

      Comment


      • #4
        Recipes

        In this forum the recipes are fantastic. Before joining, I was not much of a cooker. Desperation kicked in one day and I thought, "Gosh darnit, I want a decent meal!" You may want to look around and see if any of the recipes spark curiosity.

        Thank you for sharing. This site is full of wisdom and encouragement. I pray your journey is filled with Light and Love.


        Have the best day you possibly can.

        Comment


        • #5
          So, have been back to the Dr's today and have been prescribed Trimethopram for a few months. Any thoughts? This sounds like a bit of a cop out to me... but who knows.
          21, graduate & aspiring Quidditch player.



          'Poss' diagnosed Nov 11.

          Current management;

          Lots of water,
          Mefenamic Acid,
          Codeine & Paracetamol,
          Heat Pads,
          Knitting.

          Comment


          • #6
            It's worth a try, especially if you've been having infections.

            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


            • #7
              They've never been infections though when they do urine samples, just find some protein.What on earth is wrong with me

              I've been given Clotrimazole and now it's like horrid stabbing pains 'down there' Ouch!
              21, graduate & aspiring Quidditch player.



              'Poss' diagnosed Nov 11.

              Current management;

              Lots of water,
              Mefenamic Acid,
              Codeine & Paracetamol,
              Heat Pads,
              Knitting.

              Comment


              • #8
                Sawwie!

                I had the same Urethra sensations you describe. At first I thought it was an injury there from a catheter that was used during a medical procedure, but it didn't go away. Then I thought perhaps kidney stones (I had had many of those before but they usually didn't get "stuck" for that long) but it wasn't. I felt like my brain wasn't able to think about anything but that whole little Urinary tract, like I was nothing more than a walking bladder to it. It is awful when it's like that. The IC diet is definitely a great place to start while waiting on a diagnosis. Like Donna said, if it is IC you may get some actual relief and if it isn't IC you definitely didn't lose anything trying it.

                Your doctor may be able to help you with the stabbing pains in the Urethra you are experiencing while you are waiting on the diagnosis as well. There are several prescription medications that numb the Urethra that are typically used in patients with kidney stones they are trying to pass. Some of these medications come with pain medications mixed into them that will make you sleepy, but there are other's without narcotic pain meds in them if you need to avoid the drowsiness for work or school. I am not sure about in England, but in the US there is an over-the-counter medication called Azo standard that can be purchased without a prescription that also helps with numbing the urethra for the burning sensations of UTI's and can be found in pharmacies or grocery stores near the incontinence and feminine hygiene sections.

                Comment


                • #9
                  Thanks Jadia! Well, my GP only said 'maybe' because the ultrasound technician suggested it! I've ordered some AZO off of Amazon, fingers crossed it arrives before Reading Festival.. or before the entire country collapses into anarchy.
                  21, graduate & aspiring Quidditch player.



                  'Poss' diagnosed Nov 11.

                  Current management;

                  Lots of water,
                  Mefenamic Acid,
                  Codeine & Paracetamol,
                  Heat Pads,
                  Knitting.

                  Comment


                  • #10
                    Oh dear, I have seen reports on the craziness over there. I hope the Azo helps you out and you stay safe!

                    Comment


                    • #11
                      I've had a good two days but now it's started again so I'm trying to relax... but obviously family drama means that I can never relax... it's just a vicious circle
                      21, graduate & aspiring Quidditch player.



                      'Poss' diagnosed Nov 11.

                      Current management;

                      Lots of water,
                      Mefenamic Acid,
                      Codeine & Paracetamol,
                      Heat Pads,
                      Knitting.

                      Comment


                      • #12
                        I had to go in to the ER to FINALLY be treated with some pain meds. They did a CT scan and when that came back negative I got some lovely morphine for a few hours. It was the first time in weeks I felt I was relaxed.

                        I had my very first UTI a month ago which flared my IC apparently.

                        I thought I was going crazy because even after the course of antibiotics I still felt horrible. And then they ran cultures and there wasn't any infection in them and they kind of just wrote me off as a lost cause. The next day I had to go to the ER.

                        I was very blessed to get a refferal from the ER doc for a Urologist who's specialty is IC. Then for once someone took me seriously. He pretty much told me the next day I probably have IC. He rushed me to have my Cysto to confirm it 2 days later.

                        So I totally get where you're coming from. It's so horrible when not even doctors can tell you what's wrong with you. My only advice would be to keep going down the list of Uros that you can see and try to find one that cares.

                        Even though I am now 2K dollar in debt for the ER visit I think it was the best thing I could have done for myself. I don't think I would have made it another day. I hope you can find someone who will listen and know what to do for you.

                        Comment


                        • #13
                          I have a doctor's appointment today so I'm going to try to get a referral to a specialist. I'm getting really fed up with it now. I've been o.k all morning and now I've just been to the bathroom and instantly I feel I have to go again.


                          Any ideas how I'm going to get through 4days of camping next week with this?
                          21, graduate & aspiring Quidditch player.



                          'Poss' diagnosed Nov 11.

                          Current management;

                          Lots of water,
                          Mefenamic Acid,
                          Codeine & Paracetamol,
                          Heat Pads,
                          Knitting.

                          Comment


                          • #14
                            I know how you feel

                            My issue started with my IBS acting up. Also kept finding protein in my urine...then came the back to back monthly UTI infections..I had four or five before my regular DR. mentioned IC and wanted me to see a urologist. I went to urologist Jan 18 and had the hyrdo distention with cystoscopy. This is when I was diagnosed. This surgery works well for me. I went into remission for about 6 months. I had another done August 8th and I am feeling much better and hope for the same results. IC just rocked my whole world but I thank GOD I didn't have to go for years suffering without a diagnosis.

                            Good luck

                            Comment


                            • #15
                              So, I went camping from thursday to monday and I had no flare. Apparently the state of the toilets (ie a pit with a board on for 1000s of people) scared it into submission. I've had around 4 days of blissful no problems but now I'm starting to flare.

                              I am so fed up of this cycle! My GP has suggested a possible pelvic infection so I am on super strength antibiotics for a while but I'm afraid I'll get thrush from it all and that's just more frustration and discomfort!

                              I managed to get an appointment with a Gynacologist in three weeks so fingers crossed.

                              Writing on here like a diary is good therapy to vent my frustration and anger!

                              I tried a diet but it's so hard because I'm a sour-a-holic and love tomatoes GAH!
                              21, graduate & aspiring Quidditch player.



                              'Poss' diagnosed Nov 11.

                              Current management;

                              Lots of water,
                              Mefenamic Acid,
                              Codeine & Paracetamol,
                              Heat Pads,
                              Knitting.

                              Comment

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