No announcement yet.

Glad I found this forum

  • Filter
  • Time
  • Show
Clear All
new posts

  • Glad I found this forum

    Hi all! I'm Barbara (Kardoula) from the Netherlands (an expat from the US living here). I live in a university town called Leiden in South Holland. I have been suffering with bladder problems for about 25 years. I have been given so much antibiotic over the years that it barely works on anything anymore. I also have IBS. Needless to say, from my navel down...I'm in misery. Just this week, I was finally diagnosed with Interstitial Cystitis. In a way, it was kind of a relief to be able to put a name to the pain I have been experiencing. Before I went for the cystoscope, I imagined that I was going to hear that I was dying. So, compared to dying, my diagnosis wasn't so bad.

    I'm in the process, right now, of reading everything I can on the subject to see how I can help myself feel better. I am determined to find a way to do whatever it takes to cope with this in the best way possible. I realize that the pain is going to be there but finding a way to deal with it and maybe even relieve some it is my objective.

    I am a former workaholic (14 hour days for more than 25 years) and recently was told by my doctor that I 'burned out' and my immune system is pretty shot. I decided to leave my high pressure exec job and start my own consulting firm. Lots of changes and the stress is still there. I am married to a pessimist (but a good guy), have three grown kids and three grandkids. That's me and I'm really happy to have found this forum. I'm feeling a bit alone at the moment.

  • #2
    Hi Kardoula!
    Welcome to the ICN. Sorry you have to be here, but I am glad you found us. You sound like you are starting out with a very good attitude and that is very important. Take time to look around the whole website, not just the forum. If you click the Patient tab at the top left of this screen you will find a lot of great info for someone just starting out with this journey.

    It is very reasonable that you feel alone right now. Just know that there is always someone here to talk to and you can always search around for other members experiences.

    What meds are you currently taking for your IC? YOu didn't say what your primary symptoms were either. Some of us have more pain and others have more frequency and urgency and some have it all.

    Is it also good that you are working to lower your stress level. From what you said you already have learned what stress can do to your body, it can also cause a lot of problems for those of us with IC.

    Again, welcome.

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      I want to give you a welcome as well. I happen to be a male, but I was still diagnosed back in 1997. Regardless, I did work over 13 years with IC, but I could not have handled a 14 hour shift. Wow! None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. At least, you have found a good place, on here, where we do understand. It is not too uncommon to feel alone.(or lost like I felt for a while) You know you are not the only one at all.


      • #4
        Hi Barbara

        Welcome to the ICN, -but so sorry you've had the need to join us! Hopefully you'll find lots of helpful advice and support here.

        I agree, you seem to have a great attitude and that can really help with your goal of getting better. Have you found the IC diet yet? If not, check it out: That one change made a world of difference for me.

        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


        • #5
          Thanks so much to everyone!

          Thanks for your quick responses to my introduction. My symptoms are pretty much all of those listed. Every time I would drink a bit of water, I'd be in the toilet every 15 minutes. It became very difficult to plan any kind of outing with my husband or friends. I had terrible cramps and pain in my bladder region. And forget about romance...ugh, painful as hell! The frequent bladder infections were the worst. I would drink less water so I could function as a normal person in the world (without having to pee every few minutes) and then would get bladder infections. The pain was constant but often I would get sharp stabbing pains that nearly brought me to my knees. The doctors just kept giving me antibiotic, even when my urine didn't show any signs of infection in the kidneys or bladder.

          Basically, stress led to a compromised immune system and I developed osteo-arthritis, psoriasis and Type 2 Diabetes. I felt like I was simply falling apart. I went to a naturopath who has helped me tremendously and is actually the one who suggested I might have IC. I was rejected numerous times by my physician regarding that idea butI finally was able to see a urologist who made the diagnosis. (Medicine is practiced a little differently here, in the Netherlands). I will go today, in about two hours, back to my 'house doctor' to find out what medication I will be taking for the IC. I'm already so sick of taking medication for the diabetes and the IBS...I can barely face the idea of more pills! At least I know what it is and feel relieved that it's not 'just all in my head' as my doctor repeatedly told me. It's been a really difficult few years but I feel a sense of relief in just knowing what's wrong so I can tackle it head on.


          • #6
            I'd like to add another to the IC Network.

            I'm another one with diabetes in addition to my IC. I have found that diet is extremely important for both the IC and the diabetes. My IC was diagnosed 36 years ago; it took a while to find which treatment options work best for me and which foods and drinks are a problem, but I do feel good most of the time.

            Sending warm healing thoughts,
            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            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:


            Diet list:

            AUA Guidelines:

            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.

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


            • #7
              An unfortunate welcom Kard, but glad you found this site. You will get a lot of info and support here. Definitely try to stick with the diet, minus the diabetes aspect. A necessary evil is fluids you can tolerate. You want to keep that urine diluted, and though it may make you pee a bit more, it will be less painful (hopefully). Avoiding fluids will be your worst enemy. The Netherlands, is not MJ legal there? A lot of folks get relief with it.


              • #8
                Hi bob...I am sorry but I don't know what MJ is. I suppose I need to dig a bit deeper in the forum and on the site.


                • #9
                  Oh...duh!! I just figured it out...marijuana, right? Geez, I am getting old. :-) Yes, it's legal here.


                  • #10
                    I wanted to second Jill's mention that avoiding fluids can be your worst enemy. In the beginning it seemed reasonable to me that restricting fluids would help. I'd certainly go less. What I've learned is that it actually makes me feel like I have to go more, plus intensifies the pain, as it only serves to make my urine more concentrated & irritating. I have found that the more pure untreated water I drink, the better I feel and the less I have to go. Backwards, I know!

                    I hope your doctor appointment goes well today!
                    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."