No announcement yet.

Newly diagnosed, yesterday

  • Filter
  • Time
  • Show
Clear All
new posts

  • Newly diagnosed, yesterday

    Hi everyone!

    After years of doctors guessing at what has caused my problems, I was finally referred to a urinologist yesterday. He listened to me carefully, and dx. me with IC. I am going in for hydro...something soon. He said I am so "classic" a case that it is amazing it has taken years for anyone to put the pieces together.

    I am so excited. Of course, not excited to have IC, but to finally have a dx.

    First off, I now have answers to why I have spent years having VERY painful sex, bleeding after intercourse, soreness, and on and on. I was always blamed and told I needed to "loosen up." Gosh, years of feeling guilty that I couldn't satisfy my husband. I cried our whole honeymoon.

    Now, I also understand the pelvic pain (sometimes migrating to my lower pelvis and sometimes my back or vaginal area). I also understand why I have urinary urgency and go repeatedly (even if I just went). I know it seems silly, but I'm sooooo glad to know I'm not crazy: I always wondered who really pees seven times a night besides me? Sometimes I watch the clock and it has literally only been four minutes since I went and my bladder is "convinced" it is about to explode with urine again.

    I am so happy I found this site! Thanks for taking the time to read this!
    Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

    I have too many chronic illnesses to mention: so I won't.

    "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

    "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)

  • #2
    Oh honey, you are not alone! I'm so sorry you went that long undiagnosed! I hope you find support and information here! I sure have!!!
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]



    • #3
      to the IC network. I'm so happy that you found out site. There is a lot of great info here. I'm sorry to hear that you were diagnoised with IC but most of us know the joy of the diagnois. I was smiling from ear to ear and my hubby thought I was crazy. I was just happy to know it wasn't just in my head and there was something really wrong with me.
      If you haven't already you may want to check out the patient handbook, there is a link for it at the top of the page. The IC diet is there and that helps a lot of people.
      I hope you start to feel better soon

      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus


      • #4
        HI Private! I'm glad you found us too!
        I too know how great it feels when you 'finally figure it all out'. It's too bad it takes SO long for that to happen! I hope you can get on some good meds and can get on with your life now. Good luck! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


        • #5
          I am glad you finally got a dg, sorry it was IC though...
          Well glad you found us

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

          Link to Patient Handbook:

          Diet Reference Sheet:

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

          ICN 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
            Oh, you poor thing. I waited years to be diagnosed, too, so I know what that's like. And it is so great to feel validated.

            So, now you have a bit of a road to travel; it usually takes some time to find the right treatment or combination of treatments for each individual. That's the strangest thing about IC -- we are all so different. But you will see improvement soon and meanwhile, come here any time at all to ask questions or just to let off steam. We're here for you.

            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

            On the Beach with IC


            • #7
              thanks everyone!

              Thanks everyone for welcoming me. I plan on doing a lot of research now that I have a dx. Right now, I'm a little overwhelmed, but that is how it is with any new dx. I'm also hungry so...I'm going downstairs to get breakfast. Take Care. -J
              Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

              I have too many chronic illnesses to mention: so I won't.

              "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

              "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)


              • #8
                I am so sorry that it took you so long to be d/xed. It took a long time for me too, so I know exactly what that's like. It is awful to be hurting, and then not know what's wrong on top of it, and the final blow is Drs. thinking it's all in your head or something. It is WONDERFUL just to finally know and be validated!

                Though I am sorry that it is IC, I am glad you know what it is, and that you found us so quickly. I want to add my to the others. You are really going to like it here. Everyone is very caring and supportive. There is also so much knowledge and information here. I think you are going to feel like you have finally come home!

                I look forward to getting to know you!




                • #9
                  thank you

                  Thank you Amy for the very friendly welcome. Everyone here seems so kind. I'm overwhelmed with what I've learned in just one day.

                  All of the years of thinking (and being told by doctors) that I just needed to loosen up during sex because it was a "psychological thing" made me feel like a loon.
                  I even had one gyno suggest greasing up a cucumber and "practicing"

                  The lower back pain comes and goes, but the urinary urgency has been there for years and is fairly is the constant night wakening to grace the throne . I also have recurrent bladder and UTI infections which almost NEVER respond to antibiotics

                  I can't wait to research more on self-help to find out things I can do to make the pain better and deal with the multiple "inconveniences" (details not necessary)

                  Well, thank you again! -J
                  Last edited by Privatepain; 05-12-2007, 06:23 AM. Reason: grammer
                  Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

                  I have too many chronic illnesses to mention: so I won't.

                  "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

                  "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)


                  • #10
                    Hi There,I am glad you found this website. There is lot of useful info here about IC.
                    The ladies here a very friendly and helpful. Sometimes it seems they know more than the doctors. I am sorry it so long for you to get a diagnosis but now that you have hopefully you get some relief real soon.

                    I am multi-diseased with : MS, IC, IBS, and PDF

                    Diagnosed with IC - May 2006 IC symptoms : burning and frequency

                    Diagnosed with MS - March 2004 MS symptoms numbness in arms and legs, muscle weakness, major lack of bladder control and increasing bowel control problems. I wear Depend underwear 24/7.

                    Diagnosed with IBS - Sept 23, 2008

                    Diagnosed with PFD - Oct 1, 2008

                    Divorced Oct. 2009

                    IC Meds

                    Lortab for pain

                    MS Meds:

                    Skelaxin ( muscle relaxer)
                    Neurototin for pain

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

                    The Serenity Prayer:
                    God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.


                    • #11
                      Yesterday is the first day of the rest of your life with control back in it. Atleast that is how I felt when I was finally diagnosed. I have spent hours learning and reading EVERTHING there is about IC--diet, drugs, homeopaths,exercise, stretches, hot baths, which water is safe and etc. I have my life back and am enjoying life again:-) You will too:-)
                      Wishing you well very soon.

                      Stopped taking Elmiron for the time being-- could not tolerate side effects

                      ADARAX 25mg at night and at times morning
                      Calcium mag citrate w/ vit.D
                      Prelief 8 to 10 a day
                      Cystoprotek 4 a day

                      ~God's mercy and grace are infinite~


                      • #12
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation:

                        Institute of Female Pelvic Medicine (J. Dell, My MD)
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas