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  • OK HAD THE URODYNAMICS DONE TODAY...but Im still confused

    OK....I had the miserable Urodynamic Testing done. Doc said although my bladder wasnt freakin out and contracting abnormlally I can only hold very little fluid in my bladder at a time...she sorta giggled and said now she can tell I go to the bathroom alot. She was also talking to the nurse in the room and said something about my Pelvic Floor being to "tense" (I think thats what she said) causing the pain with sex and all the cramping I get when I hold my urine in too long and after I pee after holding it in too long (LIKE TODAY DURING THE TESTS I HAD HORRIBLE CRAMPING the way Is this PFD???) and that was some of the reasoning behind the cramping I was getting even though it wasnt my bladder spasming. She said all relative to IC. SO....does that mean I have IC even though there werent bladder spasms that were unusual???? I have all the other symptoms too the burning adn the urethral pain, etc (which she said could be vulvadynia...whast that? and do I have that too?). I was hurting and I really didnt want to talk much and I didnt think of alot of ? until I left there so I figured Id ask here.

    So she gave me options...PT with electric stim to loosen the pelvic floor which will help with the pain and the bladder issues, the option to take Elmiron which since i have a serious drug sensativity I dont think is an option unless Im totally desperate and also the the option where they fill your bladder up with numbing drugs and that will give me relief for a while which she thought was a good idea.

    Im assuming since they handed me a whole folder filled with tests and treatment options the IC diet etc that the DX is IC..she said I definately have the characteristics. I just wasnt sure how important bladder spasms were to the proper diagnoses. Certainly felt like bladder contractions to her and they didnt get much CC of fluid in me...maybe 150 (I think thats what she said) I started feleing it at around 55. At 150 I felt like I was going to pee on myself.

    I go for the Cystoscope in two weeks. NOT looking foward to the pain again.

    From here its my decision as to what treatment I go for and they have to get it approved by the insurance co. Im looking towards the Biofeedback, Pysical therapy and elec stim sessions. She said takes 6 weeks (once a week) and it does help alot.

    Im just still confused as to how they tell if you have IC or not. DO they have to have the Cystoscope to confirm it? or not necessarily???


  • #2
    No, you do not have to show bladder spasms on a urodynamics test to have IC. Some do, some don't.

    Most IC patients will feel like they have to urinate at a very small volume, as you did, and also feel like they will have an accident at a very small volume, which you did. However, urodynamics isn't diagnostic of IC; it just rules out other things.

    Since we are not doctors, we can't tell you for sure if you have PFD or vulvodynia (that's when your vulva - labia, vagina, urethral opening, clitoris, etc - hurts and burns for no apparent reason). You should probably write all of your questions down, and then make a follow up appointment with your doctor, so you can go over them all with her and get her opinion.

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.


    • #3
      OK well....

      Im assuming the Pelvic Floor issues she was referring to meant that I also have the PFD...Its funny but I was so uncomfortable during and after that it all seems a blur right now...I just remember Doc discussing the pelvic floor issues she feels very strongly about that I have and that the Physical therapy and the electric stim therapy will work real well for me.

      Im feeling a little better right now although I have a horrible sting on the outer edge of my urethra so when I pee its hurting alot.

      Here comes the frequency and urgency worse then before....I tell ya, everytime someone goes messin "down there" (even the gyno) I end up in worse shape for a while

      Does anyone here suggeest what I should try first (with the exception of the medication which Im choosing NOT to do).

      Doc said first we have to control the IC then I can come back anytime and get the emergency treatments (where they put the meds inside your bladder via catheter)

      Again, Im aiming for the Biofeedback, PT and elec stim....Hope insurance is willing to pay for it.