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I'm new and here is my IC story

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  • I'm new and here is my IC story

    I hope I am doing this right, I wasn't sure how to post. My name is Lori and I just turned 32. I first started having issues with my bladder, I guess about 4 or so years ago. It started off slowly and I think I was probably having symptoms of IC before this time but I just didn't recognize them. Around 4 years ago, I started going to the bathroom more and more often. I thought it was just because at the time I drank a lot of coffee (which I drink now, maybe once a month) but even if I cut back on the coffee, I still went a lot. I was also suffering from pain, it felt like a pulling where my ovaries are. So my doctor set up a pelvic ultrasound for me. Now in order to prepare for this test, your bladder must be full. This means drinking 2 8oz glasses of water, now I don't need to tell any of you how VERY painful it is for people with IC to have to hold a really full bladder. I was so uncomfortable I started to cry a bit but at the time, I had no idea what IC was, let alone that I had it. They didn't find anything. Fast forward 2 years later, now I am going to the bathroom every hour sometimes more and waking up 3 or 4 times a night to go. One night it was so bad, that I felt like I had to go constantly and I had pain and pressure, I was so scared because I didn't know what was wrong with me. I went to my gyn and she referred me to a urogynecologist. After examining me and taking yet another urine culture and finding nothing she said I need to have the hydro with the cysto. I had them done this past Friday and she told me then you have IC. I am grateful to have found a place where other people are going through what I am. God Bless!

  • #2

    I'm glad you got a diagnosis ... but sad it took so many years for you to get the diagnosis.
    Please do look over the foods and drinks list - this can be very helpful in avoiding flares.
    This message board is a great place to find info and for support.
    Tara (tbokay)

    Age almost 33! (4/27)
    Single - no kids, but 1 cat, Bianca QT
    Diagnosed mild IC in Oct 2004 - but on 11/7/05 told I DO NOT have IC (even though 2 other doctors agree that I DO have IC)
    2nd cystoscopy 10/6/06 confirms I DO have IC! 3 out of 4 urologists agree ... It's not in my head!

    9/11/06 Urodynamic results - bladder wont hold more than 200cc without causing retention due to lack of strength in bladder to start urine flow.
    5/3/06 had IVP that revealed "mild swelling" of right kidney and ureter due to "recurrent infections or urine backup into kidney"
    4/13/07 - started RMSO once a week for six weeks - ON HOLD DUE TO INFECTION!!! Scheduled to start again 5/4/07.

    Past meds:
    Elmiron - severe nausea
    Prosed - triggers migraines
    Fentanyl - 3 day pain patch - lasted 36 hrs before I had to remove due to adverse reaction
    Vicodin - stopped working
    Tramadol - caused urine retention
    Fioricet - caused urine retention
    Nitrofurantoin (antibiotic for 3 months)
    Celebrex 200 mg
    Pyridium 200mg (for 30 days supply)


    • #3

      Have you started any treatments yet? Everyone will tell you to look in the Patient Handbook on this site and read about the IC diet; everyone will be right about this. It can make a huge difference.

      Your story is sadly all to common. A lot of us have waited years before getting a correct diagnosis. But that doesn't mean the treatments will work any less well.

      Good luck, keep us posted as you make your way along this journey.
      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


      • #4
        I too went through many painful ovarian ultrasounds. I swear I thought I was going to pee on the table. this was all before official dx. they always thought the pain I was having was related to endo. Of course I did have endo, but I also had IC and IBS. Now my ovaries are gone, so no more quessing there. Good Luck and read the book. I bought mine at Barnes and Noble, but they have it here on web site also.


        • #5

          I think my absolute worst time with IC was the months before diagnosis. Fortunately, my urologist was familiar with IC so I was diagnosed fairly quickly. The Patient Handbook at will help you learn more about IC.

          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


          • #6
            Hello and

            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.


            • #7
              Hello and


              • #8

                Well come to the forum. Hopefuly we can be a great suport for you when you need it. I know this site been a great comfort to me. I have been suing this site for a little over a year now. I have gotten wonderful suport and great advice from so many careing people. I hope you will get the same here.
                Sorry of course to hear of all your problems. Its not an easy thing to deal with. But hopefuly you are able to get he right meds and treatment and will get some relief soon.
                Remeber this site when you need any help or have questions. And even to just let us know your doing well. ITs good to hear when others are doing well also, always hearing all the bad things isnt good for any of us. Good news is wonderful to hear always.
                Take care of you;

                Current Conditions:
                IC,Feb 06

                Prenecious Anemia
                Stomach Ulcers
                Acid Reflux
                Low Blood Sugar

                Gaul Bladder-1996


                Elmiron,100mg 2am 2pm
                Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
                Elavil, 150 1pm
                Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
                Prilosec,20mg 1am 1pm
                Zoloft,100mg 1 pm
                Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
                Reglan, 10mg, 1 3xday with meals-for duonditis
                Ultram 50mg 1 every 4hrs as needed for pain
                Pyridim,100mg as needed
                Vicodin 5/500 as needed for pain
                Heating pad
                Ice Pack
                Arthritis Pain Equate brand 650mg usualy 2 at a time
                Stool softeners w/stimuli, 2am 2pm[/COLOR]

                Hopefuly no more gets added to the list!!!

                I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
                Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
                My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
                When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
                Dont forget to take care of you!
                Take care


                • #9
                  Glad you are here. I know you will find support and accurate information. Rmember this is the place to "let your feeling hang out" because, as you probably know, most people just don't get it
                  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