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My Story

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  • My Story

    I have been reading these boards for weeks now and thought that I should finally introduce myself to all of you wonderful amazing people. I will post my story here because I have not been diagonosed with IC. But I am 100% sure that this is what has been tormenting me for years. I am 46 years old. I started getting UTI's when I was 6 mo. old and got them many times every year, about 15 years ago is when I think the UTI'S weren't UTI'S any more. I have had 2 bladder surgeries to repair a ureathal reflux. The first one when I was 6 years old was the first surgery of it's kind to ever be done in the US. But the materials that were used to reimplant the valuves desolved and I had to have the valuves replaced again when I was 18. Oh and they had to do 3 valuves each time because I have three kidneys. Which sounds good but I have lost huge chunks of them from the bladder infections that could travel up the uritures when the valuves were gone. I also had a horrible surgery called "widening the bladder neck" when I was very young, I'm not sure what the purpose was supposed to be. I found out years later that it is a barbaric thing that they used to do to women and involved sniping the muscle in your bladder that opens to alow you to pee! So now I have a slight leakage problem. grrrr I'd love to get my hands on that stoopid Dr!! Anyway for the last 15 years I have seen Dr. after Dr. for the infections and no one could tell me why I kept getting them, what to do about them or if they were actually infections. They would say "not the typical infection", "urine shows MAYBE SLIGHT signs" , "here take this medicine". Id take all the meds and it just never went away. They gave up on me so I simply stopped going to the Drs. Then about a month ago I was having the upteenth day of very painful pain, just sitting in the tub crying to my 23 year old daughter about how depressed I was from being tortured by my bladder for so many years and not knowing why. Well she and I got on the computer and found this site. I just bawled reading all of your stories and stuff. None of the stories are just like mine but if you take a little bit from each, it is me excatly. I have learned so much here and feel relieved that there are things that I can do to help myself. I started the elimination diet the next day. It has been frustrating and so far I don't know what foods trigger my flares, except catsup...OUCH! But I will keep at it. And yes I know that I need to find a good Dr and get a diagnosis but I am self employed with no health insurance. I make too much money to qualify for the Oregon Health Plan but only enough to barely get me through the month. I really can't make more than do now, but am really pushing through the pain and working a second job that is building a business that will pay really well eventually, but not yet. So for now I am on my own with this bladder hell. Sorry this is sooo long , but it really is my life story. Thanks to all of you out there who are reaching out to others who are hurting too.
    "That which doesn't kill us, only makes us stronger."

  • #2
    Hi Lori Jo,

    It sounds like you have been through quite a bit. I hope you get some answers soon on what is bothering you, and I truly hope it's not IC!! But if it is, we're here for you and there are treatments to help you. Just hang in there!

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


    • #3
      I'm sorry to hear that you've been through so much I hope you don't have IC... but like Jess said, if it is you have certainly come to the right place.

      I was just diagnosed last Thursday and have found these message boards to be a lifesaver... lots of really great information, and lots of loving support!

      Good luck with your search for answers... and I hope you are not in too much pain tonight grouphug grouphug


      *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.


      • #4
        Lori I pm you threw the icn. hope you email me back. kissing grouphug
        Your story seems alot like my as in uti's and surgerys
        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!


        • #5
          Hi Lori Jo and welcome, you certainly have been through so much, and starting at such a young age. I am glad you have joined us, and hope that we all can help you with support, love and compassion. This is a wonderful site for information, and to make new friendships with gals, and some guys, who are all dealing with bladder problems in so many ways. IC is definitely one pain in the butt, and other several places, but there are always so many good people to share the bad days and the good. Be more than happy to help you in any way I can, welcoming hugs 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.


          • #6
            I know you are in a really tough spot --- right in the middle where you can't get any help with health problems.

            I hope you feel better very soon.

            Sending warm healing thoughts,
            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


            • #7
              hugs I hope you find a great doctor who is willing to listen toyou and take action to help you thru this. I hope you don't have IC, but, you might.. I am glad you found us there is a wealth of infor thru these pages
              'The will of God will never take you where the Grace of God will not protect you.'