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I'm so glad I found you!

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  • I'm so glad I found you!

    I've just registered here but I've been reading for a while. This site has been a God send to me both mentally and informatively. For a while, I thought I was crazy with the symptoms I was having. Reading what everyone shares here has assured me that I am at least of sound mind, if not body.

    I have had urinary problems for about 20 years. I was originally diagnosed with trigonitis. I would frequently develop UTI's, on an average of 3-4 per year. About 5 years ago, I had a total abdominal hysterectomy due to endometriosis. That seems to be when my life changed and my bladder took on a personality of it's own.

    I started developing incontinece and bladder discomfort. My urologist did a cysto and found my bladder only holds 140cc and recommended I have a TVT procedure. Thinking this was the cause of my problems, I planned on having the procedure this summer. Then, in April, I began having the worst pain I have ever experienced. It felt like a massive UTI. My urine was full of blood. I was treated with 2 courses of Levequin, to no avail. It took about 2 weeks or more to "resolve" but left me with a constant knowledge that my bladder was not right. I could always feel it. It would very often hurt to urinate. My bladder would then go into spasms that I could actually feel.

    I just went to the urologist yesterday. I am scheduled for a CAT scan to rule out stones and a cysto with overdistention (that's how the script is written). Based on my symptoms, it appears more likely that it is IC. Yesterday was a fairly good day but, today, I'm back in agony. Had to call off of work.

    Aside from the painful urination and spasms, I get the frequent sensation of sharp, stabbing pain in my urethra. I have frequency and urgency all the time along with increased incontinence. My whole abdomen feels over sensitive. I can't stand anything to press on it. It is uncomfortable to sit for any length of time as well. Interestingly though, I have no back pain nor do I get up more than 1 time at night to urinate.

    Does this sound like IC? Also, is an overdistention the same thing as a hydrodistention? I am not scheduled for any anesthesia and this has me concerned.

    Thank you for all the help you wonderful people provide. I cannot tell you how much it does for those of us who are new to this.

  • #2
    That sure sounds like IC!!! Sounds a lot like mine actually!!!

    We are glad to have you here but sorry that you are facing a possible diagnosis of IC.

    About the cysto--I am not sure if over is the same as hydro. I would think not since you aren't going to be knocked out. Did the doctor go over the procedure with you at all?

    You might want to call your urologist's office and ask what exactly the procedure entails. If they say that they fill the bladder to max with water, I would ask if I could be knocked out. That is a painful procedure to be awake for.

    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      Welcome! I am so glad you found us!!!! I am so sorry you are suffering like this! We all understand and are here to support you and answer any questions you may have! It sure sounds like IC to me too!

      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


      • #4
        Thank you so much for making me feel welcome. I think I'll be hanging out with you quite a bit!


        • #5
          Welcome! Glad you found us. I am also an IC newbie and this sight has helped me tremedously!

          Good luck finding what works for you and again, welcome!

          Currently battling:
          Panic attacks/Anxiety Disorder

          Current Treatments:
          Pain Meds and Anxiety Meds
          Gentle Physical Therapy
          Heating Pad~my best friend
          Lots of hot baths w/ Epsom Salts & Baking Soda
          Tens Unit


          • #6
            Hi and

            Yes, overdistention usually is the same as a hydrodistention -- different docs write it different ways.

            I too am concerned about the lack of anesthesia; is there any way you can call back and find out exactly how the procedure will be done? The distention is very very painful, especially if you do have IC, and general anesthesia is a must in my humble opinion! (Although spinal anesthesia is good too, and a lot of ladies here have had it done that way.)

            I'm really glad you found us, as your symptoms do certainly sound like IC symptoms. I'm also glad that you're heading towards a diagnosis now -- the time before the diagnosis is the WORST, since you don't know where the heck the symptoms are coming from, what to do about them, or if they are even real at times. However, once you have a diagnosis, you can begin to explore the various treatment options available so you can start to feel better!

            *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.


            • #7
              I called the Uro's office today. The Dr. ordered Levsin SL every 6 hours. I have stopped the Motrin 800mg after reading here. I also have Azo and Lortab. It's tolerable right now so, hopefully, I'll get some rest tonight. I've also started the IC diet. My stars, I was eating EVERYTHING that was a potential irritant!

              I asked the nurse about the overdistention vs. the hydro. She said it was the same thing but if it hurts, they will stop it. They'll also use a "local". Not sure if I'm going to go along with that. Right now, just the thought of a catheter makes me cringe!

              Thanks for all your support and kind words. Your all


              • #8
                OMG ..They are only using local.. I strongly suggest you get a second opinion on this..

                Oh and I so I almost forgot ...


                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.


                • #9
                  I was thinking the same thing Ronda, I wouldn't do a hydro under local, that scares the crap out of me!

                  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