No announcement yet.


  • Time
  • Show
Clear All
new posts

  • Finally!

    Finally got my diagnoses of PBS/IC. Didn't ask if mild or moderate- not sure I want to know. Have finally found a very competent experienced professional to work with me on treatment and is open to whatever is needed. Discussed the Elmiron but not sure I'm ready yet.- if that makes any sense? Right now we're treating the symptoms and will be trying to figure out what if any my triggers are. Not happy I have this, but oh so happy that I found someone that actually takes time to discuss everything.

  • #2
    Thats awesome!! Happy to hear you have some answers!

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      Thank you. At least now I can ask about a treatment and not have someone look at me with this puzzled look on their face because they have never heard of what I'm talking about! Let me know how the Elmiron is working for you and if it eventually gets you off the OAB meds. I'd be curious to know if it helps with the frequency because I may eventually be trying it.


      • #4
        Earthlady- so glad to hear you found someone to care for you. Good luck in your treatment. It is very fifficult out here to find someone. I am going on my 3rd Urologist. Best wishes
        Diagnosed December 2010

        Philippians 4:13- I can do all things through Christ which strengtheneth me.

        John 3:16 -For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.


        • #5
          Thanks. This was my third one and I was hoping I wouldn't have to search for a fourth. I hope your current "third" is helping you.


          • #6
            Glad you found an answer! They day I was diagnosed I came out of the office with a big smile on my face and my Mom was excited as well. People would have thought we were crazy if there had been anyone in the waiting room! I was just SO glad to KNOW! It is such a relief to know and have a place to start from and work on getting better, isn't it?

            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


            • #7
              Yes, it is a huge relief to find someone who will put a lot of effort into finding the right individualized treatment.


              • #8
                Congratulations on your diagnosis!

                Now that you know, you will discover so many wonderful tools on this journey!

                Thanks for taking the time to share and have the best day you possibly can


                • #9
                  I'm glad to hear that you finally got answers and some peace of mind of what is going on with you. I was just diagnosed with IC. I'm a family practice doctor and I was never trained on IC. Who knows how many people I missed? I knew something was wrong and felt helpless. I live in a smaller town and we actually have one group of urologists who don't even believe in IC!! And the other urologists don't have a clue either. It's the blind leading the blind. I was lucky that my gyn is a urogyn and that's her speciality. She didn't know until I had surgery for a sling and she decided to do the cystscope. I looked at the pictures in disbelief. I did a lot of reading since then. Ic is one complicated illness!! I have a few patients that I have already spotted who may have problems that I believe is IC. Unfortunately we can't know it all, medicine is complicated and never simple at times. I've learned a lot on this one site. I have had my share of recent illnesses that have made me a better and more understanding doctor. I make sure I take 30 minutes with patients who are complicated. The hospital doesn't like it but screw them. Poor doctors have to see patients every 5 minutes! How can you help someone in 5 minutes? It's crazy. I feel medicine was God's calling for me but there's no way I can know every illness and disease out there. I have to know when to refer out and pick the right doctor. Right now I'm working on the diet. I'm gluten sensitive, lactose and soy intolerant also. The first instill I went blindly into and won't make the same mistake again. It was awful. I'm drugged out on pain meds and Urelle. They are helping. Prelief has helped also. Doxycycline I just started and that's based on one study that it may help with my urethra. I feel like a guinea pig. I'm on more meds than my elderly parents. LOL My prayers are with you. Good Luck!!



                  • #10
                    passion4life- Thanks, and you are right there are a lot of tools and educational info on this site. It's a Godsend for all of us.


                    • #11
                      greengenes3- Thank you for sharing your information with us from a doctor's point of view. I guess this condition is confusing for everyone. It varies so much from person to person. The Urelle was too hard for me to take. It left such a bad taste in my mouth I couldn't eat. I'm always amazed at how different everyone is in what they can tolerate. I think I will refer my current dr. who is now treating me (and very well I have to add) to this site. It just might be very helpful for her to read patient's experiences with treatments.


                      • #12
                        I'm joining the IC Club

                        I got my diagnosis this past Tuesday. As I walked out of the uro's office I felt a huge weight off my shoulders that FINALLY I found someone to help me and I was going to get relief. Now that reality has set in, I am a bit blue; knowing I will always have this condition; and having to give up my morning coffee and my Friday night glass of wine. I have to tell myself to look at the bigger picture -- this is not a fatal disease; it is a condition I have to learn to manage. I am so thrilled to find this site and know others understand!


                        • #13
                          The irony in feeling happiness after being diagnosed with incurable IC!

                          I suppose we've all been there. I know for me there was such a sense of relief in the validation, -I was not crazy after all! And now I had something concrete that I could fight against.

                          Discussed the Elmiron but not sure I'm ready yet.- if that makes any sense?
                          You have to do what feels right to you. It sounds like you have a good doctor who is up to the challenge of treating IC and hopefully you will soon find a treatment that works for you!

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


                          • #14
                            Also just diagnosed

                            Hello everyone! It will also be a week tomorrow that I was finally diagnosed with IC. There was a bit of confusion between me and my urologist. He kept testing me for things with negative results so I ended up going to my OB/GYN. Because my symptoms weren't typical for IC, (Mine were all urethral), he basically told me to go hone and quit thinking about it!!). That pushed me back for a fourth visit to my urologist and he said now that he had ruled everything out including a clear cystocopy, it had to be IC. I never knew you could have it without an inflamed bladder. Am presently taking Elavil 10 mg's once a day and it has given me some relief. Symptoms are much milder but the dry mouth is the pits!! I should start with 2 tabs in the evening tomorrow night but I am also constipated and the Elavil seems to be making it worse. I am a high panic/anxiety disorder person so I am sure that is not helping either. Am looking around the site now for ideas on helping with the constipation. Like all of you, it is nice to know we aren't losing our minds and all these symptoms are psychological!!


                            • #15
                              Yes it is kind of odd isn't it? Feeling happy about a diagnosis for this condition. For me it seemed to open up a variety of treatment options that weren't available before. The anxiety of not knowing what's wrong with you and not knowing what to do for treatment is a killer. I think that's were the relief comes in when you're finally diagnosed.