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I got my biopsy results this morning!

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  • #1

    I got my biopsy results this morning!

    Hi everyone!
    So I went to my uro today to find out the results of my biopsy that he did during my hydro/cysto. If you guys remember he came into the recovery room after the hydro and told me that my bladder looked normal and of course I freaked out thinking that I didn't have IC and that I would never get any relief.
    Well the biopsy showed mast cells! Lots and lots of mast cells and he confirmed that I do in fact have IC even though it didn't show up on the hydro! Who ever thinks that they will be happy to find out that they have a chronic condition that there is no cure for?!? But I am so happy to know that I am not crazy and that there really is something wrong with me!:woohoo:
    I am even more happy because he seems to be very willing to try out some meds to give me relief. He prescribed Elavil which I asked my gyn for back in Jan and she wouldn't give me!:woohoo: He also gave me Urelle to try. I am a little bit upset because he didn't give me anymore pain meds but he said he is hoping to see a big improvement in my pain levels with these new rx's and I guess he's hoping I won't need pain meds as much. He told me to come back in three months but if I'm having a lot of problems that I should call before that. I am so happy to finally confirm that it is IC!!
    Thank you so much to everybody who gave me support after my hydro when I was down in the dumps thinking that I wasn't going to get a diagnois out of this whole experience. I don't know what I would do without you guys.
    Christine



    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
    Tags: None
  • #2
    I am very sorry you have IC-but I do know that the validation you get from a positive test is a great feeling. No your not crazy, just like you thought! I am happy you finally have answeres. I hope you get tons of releif from your meds. The blue stuff is great. Blue pee is much nicer that red-orange. It hardly stains compared to pyridium and won't make you nauseated like pyridium does. I had it yesterday and I loved it. Best of luck to you and keep us posted!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

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    • #3
      I never thought I would post a congrats about someone having ic before.
      I am so glad you got your dx, there is nothing worse then not knowing..

      hugs to you
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment

      • #4
        Yippee-- some answers. I feel weird saying that but at least you know now and you can proceed in the direction of getting relief. I know so many get relief with Elavil - I got a lot - just had a bad reaction to it so I had to stop for my own sanity! Hopefully you will start feeling a lot better soon.

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        • #5
          Oh I bet you are so relieved....I know its not a good thing for anyone to get IC, But like you said at least you know your not crazy and now the doctor will take you seriously...Well I hate to say it but welcome to the club ......((((((hugs))))))))))
          Hugs
          Ronda

          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:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          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.

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          • #6
            I am glad you found out for sure and they have started you on meds. Hopefully these will help with your pain. I also felt relief when I was finally told.
            God grant me the serinity to withstand the days ahead!!!

            My myspace link...
            www.myspace.com/patricia_luvs_matt

            Patricia

            In Memory of My Father (Lawerence) 1/25/2007

            Procedures:
            Interstim Sept 2001
            1st InterStim Removal May 2005
            2nd Interstim Implanted May 2005
            2nd InterStim Removed March 2007
            Hysterectomy 1999
            Tubes Tied 1997
            C-Section 1996

            Me and my kids


            Taylor (my daughter) Me and my daughter My son Cody and Taylor

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            • #7
              The same thing happened to me!

              Exactly the same, after the hydro the doc said he saw "minimal pinpoint bleeding, not enough to confirm IC", and that my bladder "looked basically healthy and had a large capacity (1000cc)". I (like you) was devastated thinking that I KNOW there's something not right!!!

              A few weeks later I went in for the biopsy results. The NP said I DID in fact have IC - the pinpoint bleeding and more importantly the biopsy confirmed it, I also had tons of mast cells there.

              Hopefully you'll be on you're way to feeling better soon! What a relief I know you are feeling!

              ~ Chris
              Thank You all so much to everyone here for all your sharing, caring and support!
              < My "Bear"
              CurrentTreatments:
              Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
              IC Diet
              Hydroxyzine 50 or 100mg at night (Is restarted)
              Zoloft 100mg 4/8/07 (Is restarted)
              Klonopin 1/2 mg 4 X Day (started 3/17/07)
              Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

              Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
              Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

              My Myspace page - http://www.myspace.com/42620225

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              • #8
                I am so glad that you finally have a definitive d/x! Though I hate that it is IC, I agree with the others that at least now they can proceed with treating you and you wont be treated like some hypochondriac! I am also very happy that the biopsy ruled out cancer. I know that is always a huge fear when someone is sick all the time and they arent sure why. I hope your new meds bring you lots of relief!

                Hugs,
                Amy

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                • #9
                  I definitely understand about wanting to know what is going on. Especially now you can get help, that is wonderful. Sorry too that you have IC but glad you now can get help.

                  Sending hugs, Trishann

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                  • #10
                    :woohoo: :woohoo: Now you know and can start getting treatments for it. Sounds like the doctor is one who will be understanding and helpful. So glad things turned around and you are happy now. Not great to find out you have IC but at least you now have a start.

                    Comment

                    • #11
                      I was like you also, I was beginning to think it was all in my head, so when they put a name to all the pain and problems i had, i was almost glad.

                      Comment

                      • #12
                        So happy to know that you are finally dx -- sorry thats its IC. Now you can be treated with the right medications. Sounds like your doctor is a caring and understanding.:woohoo:

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                        • #13
                          So glad you have answers now.

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                          • #14
                            I'm really glad that you can let go of that particular worry, and move forward with (hopefully successful) treatment. You have a lot of people depending on 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

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                            • #15
                              Now you know! I think my worst time with IC was before my diagnosis. Now you hopefully will begin to move forward.

                              Hugs,
                              Donna
                              Stay safe


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                              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.                               [3MG]

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

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