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  • I am so GLAD I found you!

    I have been going to different Dr.'s (GP's & OBGYN's) for the past 4 years for pain & cramping. They all do blood & urine tests, ultrasounds, pelvic exams.They tell me nothing is wrong. Last month I went to a new OBGYN for the pain(he did all the same test) & all he told me was I have high cholesterol...I went back to him yesterday & told him the pain is worse..THERE IS SOMETHING WRONG! He did a pelvic & when he touched my bladder, I just about jumped off the table in pain.He said my bledder is very inflamed.
    Then he did a urine test (negative)
    He then refered me to a Urologist..He gave me a sample of pain meds at my insistence.

    I got home & hit the internet & I found this site.

    OMG.. I have had these all these symptoms all this time & have been suffering.
    I am making an appointment with the urologist today & will mention all the info I found here.

    Thanks! :cool:

  • #2
    Hi and welcome to the site. I hope your appt. goes good. It is good to be informed that way you can work with your Dr. to find out what is wrong. It may take time to find out if IC is the problem because they will probably do test to rule out other conditions first. At least you can come here look through the handbook to help you understand what tests they might be doing or suggest something if they don't do it and you think it might help in your diagnosis.

    If it is IC, most of us find treatment and live full lives. I have had IC for 29 years now and do good most days.

    Good luck and let us know how you are doing.

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....

    Information for Patients can be found here.

    Jen's tips for great IC sex..[/url]

    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."


    • #3
      I'm also glad you found us --- welcome to the IC Network.

      I do suggest you read the information in the Patient Handbook at You'll find a lot of helpful information there.

      And even though you don't know for sure that you do have IC, you might give the IC diet a try. Nearly all of us do have some foods and drinks that cause pain. And some find that just following the diet considerably eases symptoms.

      And just remember --- there is life with IC. I was diagnosed 29 years ago and I lead an active life. It can take time to find the best treatment options, but most of us do find treatments that allow us to feel good.

      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


      • #4
        Hi Butterfly! Glad to have you here! I hope you don't have IC, but if you do, you've come to the right place. If you would like to talk privately feel free to pm through the site here. IC has been part of my life for a very long time.

        Try reading some of the patient stories, and of course the IC diet, as well as the patient handbook, all accessible from the pull down menu at the top of the page.


        Hugs and love,
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


        • #5
          LOL well three times the same advice, see we all wanna help lmao lmao
          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


          • #6
            Yes I looked through a lot of the ICN Patient Handbook & that's what brought me to the conclusion of having IC.
            It described me to a T.
            I am running out to get some Prelief...hoping for some relief...hey I can rhyme
            I did not realize about the diet & all.
            Now I have the info to use in relieving the pain.
            A past OBGYN wanted to do a hysterectomy when he could not come up with an answer.
            Now I have come to see that it is not a GYN problem..which I have been thinking for years.


            • #7
              Welcome to this very supportive site. It has been a godsend for me! grouphug I think everyone else has said what I would have said so, just wanted to say hi and welcome! hi

              "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."


              • #8
                I have an app't 03/25.
                I will try the prelief & diet until then.


                • #9
                  I am so glad that you have an appt. on the 25th pleas let us know what he says. In the mean tim if you have any questions please ask grouphug
                  'The will of God will never take you where the Grace of God will not protect you.'


                  • #10
                    i'm glad you got you appt and i hope everything goes well sending you hopes and prayers for a better tomorrow.
                    Medicine taken daily or as needed:
                    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                    2. MS.Cotin 100mg 3x daily
                    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                    4. Fentanyl 100 mg Change every 48hrs.
                    5. Gentamicin 80mg install after each rescue treatment
                    5 Leviquin 500mg self start as needed.
                    6. Klonopin 1 or 2 daily as needed.
                    7. Prosed/DS as 1 every 6hrs as needed.

                    I have IC, but IC doesn't have me anymore!


                    • #11
                      Hi Butter-Fly, I'm glad you found this site was a God sent for me.I hate that so many people have this horrid disease but was glad to know I wasn't alone or just losing my mind. You will find tons of support here..hope you feel better soon.....Brea
                      Friends are an important part of sharing the burden and worry of each day. Thank you for the gift of your friendship....Brea


                      • #12
                        My app't went well..
                        The Dr. brought up IC right away..
                        She is running some more urine cultures & I have an app't on April 8th for a cystoscopic. She want to rule out anything else 1st.
                        She gave me Uritact to help with the pain until then & she told me to watch my diet. She discussed putting me on Elmiron & Elavil if it is IC.
                        So far the Uritact does not seems to help,but I will keep taking it.


                        • #13
                          Hi Butterfly,

                          I, too, bounced from one Dr to another, hoping one could get me off of this merry-go-round of pain I was in. Multiple tests, courses of antibiotics and other treatments. None ever mentioned (or tested for) the possibility of IC. Once or twice I ran across bits of info on IC while trying to figure out for myself what was wrong with me and like you thought, boy, this sure sounds like what I"m experiencing! Eventually I quit seeking medical help as all it did is cost money while providing no relief or answers. Last fall I decided to try one more time with a new Uro, and the first thing he said was "I want to test you for IC". Sure enough, that's what it was. Between the diet and medication I'm now feeling so much better, not to mention finally having a reason for what's been going on!

                          Anyway, it sound like you have found a good Doctor who is aware of IC. Hopefully April 8th will bring you some answers. Let us know how it goes.

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


                          • #14
                            Hi Butter fly...WELCOME TO THE ICN! I am glad you found us. Sounds like you have a pretty good doc...mine thought IC right away with me too..before any tests....and although I wish he could get me symptom free..he has done better than hopefully your doc will be well informed in the best ways to help you.

                            Good luck!
                            Faith, Hope, and Love,

                            I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            or find me on facebook
                            Be the Miracle! & Pay it Forward!

                            [email protected] please contact me...I am here to help!