No announcement yet.

New to group

  • Filter
  • Time
  • Show
Clear All
new posts

  • New to group

    Hey, folk's....

    I have been reading some of the messages in the forum lately and thought it was time to sign up and participate a bit. I have really been impressed by the support and encouragement I see displayed in this group and would encourage all of you to keep it up. grouphug I suppose a brief introduction with a little history is in order, huh? Well, I am a mid 30's male who has suffered from chronic pelvic pain syndrome for the last 3.5 years. banghead At first I only had inflammation of the prostate and chronic prostatitis, but as time has passed by, my symptoms have changed to include interstitial cystitis as well. For me, it is pretty clear that this condition is acting like an active disease process because I have an inflammation process that just won't shut itself off. Of course I tried several standard therapies without success, but I have also spent my own money and traveled the world in an attempt to alleviate my constant suffering and pain. My effort's have included trip's to Los Angeles, San Francisco, Toronto and most recently a full month in Europe. Unfortunately none of these efforts helped me that much, but along the way I have picked up clues through various tests and exams that I hope will eventually lead me to relief. My current dilemma, ( besides constant pelvic pain ), lies with finding a physician who will take the time to discuss the medical information I have accumulated over the last 3 years so that we can put together a treatment that best suit's my particular medical condition. Do I need to emphasize the difficulty in finding such an individual? Anyhow, that's my short introduction.

    Thanks for listening and I hope the best for you all. wink

    Best regards.
    “Don’t criticize what you don’t understand, son. You never walked in that man’s shoes. Til we meet you again, may God bless you. Adios.”

  • #2
    Hi Idea Man,

    Welcome to the group!! IC is so difficult in itself, and finding a physician who can help you to deal with it and let alone understand it is a task as well. The least we can do is support, and sometimes that is a great thing in itself!

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


    • #3
      Hello Idea Man,
      I just wanted to say Helo and Welcome!
      Everyone here on the board is very caring and supportive.
      Im sorry I dont know the answer to your question.Im sure someone else here will probably know the answer.
      Good Luck,ICchell(Michelle)


      • #4
        Hi Idea Man and welcome to the group, I know it is hard to find someone who really understands what is going on, we have all been through that in one way or another. Like one of the gals posted, we are here to give you as much support as needed, when needed. It also is a puzzle to find the right meds to help out with IC, we are all so different in our symptoms, and the regimen we have to deal with IC. There is a lot of information to help you out, as I am sure you have read, while looking at the IC network. Once again want to welcome you, and anything I can help you with, would be happy to do so, welcoming hug Iris. hi grouphug
        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


        • #5
          Hi and welcome.
          I also don't know who to send you to but I wonder if Jill the founder of this website might be of help. The phone number is on the bottom the page and she is very knowledgable and has had physicians on the ICN for guest lectures. She knows so many people she may be the one to talk to for help in that regard. I wish you luck.

          "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."


          • #6
            Hello Idea man..
            we have a page in here for doctors you might want to look at it
            Welcome to our boards. I am sure you will find a wealth of info in these pages. Any time you have a question just post and we will answer using our own experience of course seeing none of us are doctors
            'The will of God will never take you where the Grace of God will not protect you.'


            • #7
              welcome to the icn group. grouphug
              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!


              • #8
                Welcome Idea Man. Finding a doc who will listen is tough sometimes. Some uros are very well versed in IC , while others are not. Don't get discouraged...sometimes folks visit 3or4 docs before they find one they can and want to work with. Best of luck to you. I hope you have some meds to make life a bit easier.Pleas continue to post to let us know how you are doing. grouphug Sheri
                Wishing you the best, today, tomorrow, and always! Sheri G


                • #9
                  Welcome to the group! I am a Newbie here too and have found so much support out of this group, and know that you will too. Finding a good DR that you can trust is extremely difficult, but don't get discouraged, you will find exactly what you need when you aren't looking so hard for it. Good luck to you!
                  "Give what you have. To someone else it may be better than you dare to think."

                  History of IC, Vulvodynia, Endometriosis, Adenomyosis, Polycystic Ovaries, and Cyst's on my Spine.
                  Update as of 6/27/07- Endo, Adenomyosis & Polycystic Ovaries are gone because I had a Hysterectomy in May of 2005! Still battling IC and what was thought to be Vulvodynia, now thought to be PNE.
                  Meds: Paxil 40 for IC, Clonazepam 1 for Restless Leg Syndrome, Seroquel 100 for Bipolar, and pain pills as needed.

                  You can find more info on me here:


                  • #10
                    I also am new and have found a wealth of information here! Everyone is wonderful !
                    Wish you lots of luck and hope your feeling better soon ! I did check the physician list for my area and theres a few for me to choose! Im still debating if I want a new uro or not? Maybe the list can be of help to you! Good Luck hi
                    To the world you might be one person but to one person you might be the world..
                    I am a newbie Angel ~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.


                    • #11
                      Hi and welcomeHope you find the support and help you need.
                      Life is what you Make It .By being kind to every one and all creatures your life will be more pleasant. Live your life for GOD and if it were the last day you were alive becausse it maybe.


                      • #12
                        Hi and welcome to the boards,I'm sure you will find the support you need here. There are a GREAT bunch of people here that really care....Brea
                        Friends are an important part of sharing the burden and worry of each day. Thank you for the gift of your friendship....Brea