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Could use some advice...

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  • Could use some advice...

    Hello everyone. I'd like to start by thanking all of you for your posts. I have already found so much information and comfort here. You all have proven that IF I end up with a diagnosis of IC I WILL BE OK. So Thank You.

    So I began all of this on September 29th. I was working and started have severe pain just to the right of my bladder. I ended up in the ER where they did a urine culture/pelvic ultrasound/CT scan/blood tests/pelvic exam... and found nothing so they sent me home with narcotic pain meds. They helped for a bit (taking the maximum amount) but as I'm sure you all know, I can't function in life on narcotics. I have been out of work for almost 2 months. The pain is sharp but comes and goes. There are good days and bad. My bladder also cramps and throbs at times. Badly. Anyway, I went from my GP to a GI dr. to an OBGYN. She suspected IC because my bladder hurt very bad upon palpating. She sent me to my urologist.

    Friday I had a cystoscopy. Just with Liodicane. It was TERRIBLE. I had lots of pain immediately then LOTS of pressure. My capacity was abnormal as was the amount of pain (according to dr.). He is now very suspect of IC and wants to do the cystoscopy with hydrodistension. I am very nervous for that as I bled and had a hard recovery just from the cystoscopy. BUT I am in SERIOUS pain and need relief. I have a pelvic MRI this week just to make sure there is nothing else going on. I have had 2 abdominal CT's with contrast that were normal. I am still debating on the hydro. I think my dr. was good in that he wouldn't schedule it until I did my research and read up on IC. I am glad I have time to prepare for a diagnosis. Luckily, I do not have much urgency but I do get up 3-5 times a night to urinate. And sleep is already very difficult with the pain.

    I would love any advice any of you have. I really don't know how to navigate this. Of course, I am also a bit heartbroken, but I am trying to hang in there! You are all helping already.

    Thank YOU!
    (30 year old female)
    Last edited by KrissyJ; 10-09-2011, 07:41 PM.

  • #2
    Hi, Krissy ~ So glad you found this's sure been a help to so many of us and I'm glad it's been a help to you also.

    I'm very sorry to hear your problems. I know the fears of the hydro from my 1st Uro's suggestion....but my 2nd and current Uro/Gyn hasn't even discussed it due to my specific problems.

    I'm sure you'll have some good input from others who have found good results from hydros and others who haven't. Sounds like you have a great doctor by allowing you to research and make your own decision.

    Take care and remember, we're here to support one another.

    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


    • #3
      I am one who is helped substantially by hydrodistentions. However, feeling as you do, you may want to try other treatments first. Are you following an IC diet? You'll find the latest food list at the link in my signature below.

      I hope you feel better quickly.

      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
        You didn't mention starting the diet, if you haven't yet I strongly recommend it.

        My are with you all. May you all find a way to peace and joy in your lives.


        • #5
          I figured I would give you a welcome first of all. I am a male, but I was still diagnosed with IC back in 1997. Regardless, I did notice you never mentioned frequency. Of course, we are all different in symptoms, ages, and medications. (or every case is not the same) OK. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I can understand you being heartbroken, but I have been dealing with IC over 13 years now. It still sucks, but life goes on. Besides, I have got more than IC only. (and felt lost as first)(or some months) Yep!