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  • The start of my painful journey (i think)...

    Hello everyone.

    Think i'm bit different from most people on this forum in that i'm male. I'm 29 years old and have just started to develop what I think are the symptoms of IC. My symptoms are what most people are describing here - pain and pressure in my abdomen and nearly constant urge to go to the toilet.

    My doctor currently has me on a course of antibiotics and strong painkillers, despite the fact that on testing my urine there was no bacteria. So I asked him why I had to take antibiotics where there's no infection - he kind of shrugged and said all my symptoms point towards a UTI, even though he admitted these were pretty rare in a guy my age.

    So I asked him if it could be IC? And his response? He said, that's more of a theory that a real illness. I couldn't believe it and was left really distressed and actually depressed by his response.

    I am really feeling at a low just now, not being able to see anyway out of this - i have had to take time off work for the symptoms. And in my head i'm slowly seeing my whole life collapse because of this. I really am not sure I can deal with this mentally.

    But thank goodness, there is a place I can come to talk about it - and i'm sorry to bore you all with my problems when I know everyone here is going through it.

    Conor.

  • #2
    I'm glad you found us.

    I do have two suggestions --- one is to seek a second opinion. The other is to give the IC diet a try --- you'll find a link to the latest food list in my signature below.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    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.

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    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
      Thank you so much Donna. I am going to return the doctors on Friday - and I am determined not to leave there with another set of antibiotics. I have had a good read of the IC diet - although I haven;t been able to eat much since the symptoms really started. At the moment I'm surviving on Evian water and muesli with milk...i just don't have the stomach for anything else.

      Comment


      • #4
        Hi Conor,

        Although female, I can completely relate to what you are going through and I know how emotionally and physically exhausting it can be! It would probably be a good idea to start on the diet as Donna suggested. The diet has helped with my symptoms immensely. I also drink a lot of alkaline water and keep a voiding and food diary. I'm still not sure what my triggers are because I stick to a very 'safe' diet at the moment. I told myself I would do this for 3 months and then start introducing more foods so that the bladder has time to heal.

        It would also be very helpful to get a referral to a urologist that specializes in IC. I saw one yesterday and will have a cystoscopy on Friday ( not looking forward to that! ).

        I found the anxiety caused by these symptoms almost overwhelming at times. That is when I treat myself to a massage, reflexology or acupuncture. Getting on this forum is also one if the best therapies! There are a lot of wonderful people willing to share their experiences with IC! Also, remember that remission is possible! That is what I am shooting fir and you can too!

        Suzi

        Comment


        • #5
          Hi Conner,

          Welcome to the group. My journey started with raging UTI-like symptoms as well. I was treated for a UTI with three different antibiotics while I suffered for a month. What helped me during that time:

          Drinking the perfect amount of water. Enough to keep my urine diluted, but not so much that I had to "go" every 10 minutes.

          Taking Pyridium helped during this time as well. It did a good job of reducing the frequency and that gotta go NOW urge. You may be able to find it over the counter in a product called AZO.

          Once my primary doctor figured out that it was not a UTI and referred me to a urologist, I found this site. What a godsend. Especially the IC diet. Eliminating trigger foods and drinks made a significant improvement in my symptoms. It is well worth giving a try.

          You mentioned you are eating just muesli and milk. The muesli may have some dried fruit in it that could be irritating your bladder. Something to think about.

          I hope you have better luck at your next doctor appointment. Once you get a handle on your symptoms, you're likely to have more and more good days. Try and hang in there.

          Pam

          Comment


          • #6
            Hi Conor,
            Hang in there and good luck on getting this under control, whatever it is. Three suggestions for you: 1. find a new doctor. Hundreds of thousands of people know it is more then just a theory. 2. Be very patient. They will need to rule out a lot of stuff and being a guy they will look at your prostate the most. I think most of the men here will tell you they had to do round after round of testing and treatments before they would say it was IC. 3. Keep us posted. We will try to be with you while you find out what is going on with you.
            Good luck.

            Comment


            • #7
              Thank you so much for all your really kind replies. I was thinking how did people cope all those years ago when there wasn't internet based support like this! Pam - that's a great point about the dried fruit in the muesli. I just don't feel like eating at all at the moment - I think that's a lot to do with the anxiety and stress i've had since these symptoms started.

              I think i'm just going to have to stay calm and take each day as it comes. I normally travel a lot with work - and am now back in my London flat on my own so i'm so glad I have this site to come to and talk otherwise i'd feel so on my own. I might tell my parents eventually but not yet - and my friends just don't really get it.

              Thanks so much again - I really didn't expect to get so many supportive replies. And although I'm new to this, i'll try to support everyone else as well if I can be of any help

              Conor.

              Comment


              • #8
                Oh Conner, That doctor was obviously poorly informed. I am so sorry you had that experience what a huge blow that must have been.

                Can you find a doc who specializes in IC? I know the healthcare system is different in England so you may not be able to get in very easily or quickly.
                Conditions:Migraine, Epilepsy, Adenomyosis, Left Hydrosalpinx (inflamed,blocked fallopian tube), Neurogenic, Overactive bladder
                Myofacsial pain disorder/Pelvic floor dysfunction
                Medications:
                Neurontin,Topamax,Vesicare,Hydoxizine,Urelle,Zanaflex,
                Tramadol,Cystoprotek,Naproxen.

                Comment


                • #9
                  I'd be very disapointed in a Dr. that would say what he said to you . Ic is very real . I hope you find a good uro that can help you.
                  Ic is hard and having people tell you its not really real is so sad.

                  Take care,
                  MaryJo

                  Comment


                  • #10
                    Thank you so much everybody. these messages are the only thing that brightens my day at the moment. I work shifts - so luckily I have the next 5 days off. But what do I do after that? Is it advisable to go to work to try to take my mind off it - and grin and bear it? Or should I call in sick - incase work makes the symptoms worse.

                    I'm going to see another doctor on Friday and I'm going to print off some material and show it to them. There's no way i'm being put on more antibiotics - no chance.

                    You are all lovely people...thank you so much!!

                    Conor

                    Comment


                    • #11
                      How often are you visiting the restroom? If it doesn't interfere with your work then maybe it is best to try to resume some type of work to take your mind away from your bladder (I truly empathize at how difficult that can be ). I was able to go down to part time. I still do have to travel 60 - 90 mins a day to take my child to school but I try to time my fluid intake. I did have to sit through a 2 hr meeting today all the while drinking cup after cup of hot water. I made the mistake of not visiting the bathroom for 3 hrs and I hardly made it to the restroom. I realize now I have to really put more thought into these things to avoid an accident.

                      Have you been able to start the IC diet? I can emphasize enough how much that helped. Also, getting enough sleep if you are able is also important.

                      How is your IC related-anxiety at the moment? I struggle with that as well but keep reminding myself that this takes time and remission is the end goal!


                      Please let us know how you are doing.

                      Comment


                      • #12
                        Conor

                        May I suggest vanilla milkshakes for the pain. I know it sounds simple but I am flaring right now and sitting at my desk with one, it helps me a lot!

                        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


                        • #13
                          Claire,

                          I'm wondering what you put in your milkshake.

                          Thanks!

                          Suzi

                          Comment


                          • #14
                            Suzi

                            If I am making it at home I just use vanilla ice cream, milk and put blueberries in there. If I am out I just buy one from McDonalds or BK or something.
                            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


                            • #15
                              Conor,

                              I'm wondering what you decided to do about work. Ate you going to take some time off? Also, have you expanded your diet beyond muesli?

                              Wishing you well!

                              Suzi

                              Comment

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