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  • I'm so tired of dealing with this

    Hi everyone. My name is Shelley and I'm 29 years old and have 2 daughters. Let me start off here by saying, I have no clue what is wrong with me and I'm so sick and tired of feeling like crap. My symptoms started a little over a month ago. My first inital symptom was a feeling like my vagina was about to fall out of me. After that, I felt like I had a bladder infection. On Feb. 20 I went to my GP and he did a urinalysis which came back with microscopic hematuria, but no infection. So, he sent me for a Kidney Ultrasound and IVP. Both came back clear. Had an appointment with a urologist on March 6. At that time I had no blood in my urine, but he did do a Cytoscopy. Came back clear. I asked him what in the world could be causing these spasms/muscle twitching in my bladder or urertha and he just shrugged his shoulders and said my bladder and urertha looked fine.

    Well, I'm still having these spasms, so much to the point it distrupts my whole day. I feel a frequency to pee all the time. I take that back. There will be times during the day it doesn't happen at all. Take last night for instance. I felt wonderful. Went to bed, woke up this morning peed and wanted to die. The spasms were so painful. I sat on the toliet for a good hour b/c that's the only place that made me feel halfway better. Then I got a tremndous pain in my middle right/side back. I thought for sure it was a kidney stone. Eventually it went away, but my God it hurt. So, now I'm just wondering what the heck to do. Where do I turn now? If you got this far, bless you.
    Looks like I'm an IC'er too

    Currently taking:

    Urised 1 tablet 4 x a day..My 3yo loves the fact that my pee is now blue

    Lexapro 10mg

  • #2
    First off you came to the right place for a wealth of info. See if you can find a uro that knows about IC or better yet specializes in it.
    I think it would be in the best interest to rule out all things that mimic IC, std, adheasions, endometrosis, scar tissue.. Then have a hydrodenstition done. This is where they put you under sedation and they go in and look at your bladder while searching for clasical signs of IC.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      Hi Shelley and I am so sorry that you have been feeling so horrible. I agree with Cindy, you want to find a uro that knows about IC. For most people their bladder will look normal when a cystscopy is done. I hope you get some answers and start to feel better soon
      Christine



      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

      Comment


      • #4
        You know, I really thought the would've known. He had a ton of pictures on his walls in the exam room showing what a normal bladder looked like and one with IC. I will be calling my Gyno Monday and hopefully get in with her either Monday or Tuesday. I'm scared to death of what tomorrow morning is going to bring, b/c that is when it seems the worse. Thanks so much for the advice. I have a feeling this is going to be a long ride.
        Looks like I'm an IC'er too

        Currently taking:

        Urised 1 tablet 4 x a day..My 3yo loves the fact that my pee is now blue

        Lexapro 10mg

        Comment


        • #5
          Hi Shelley,

          Your tale of woe sounds very much like my own, although mine started with a confirmed UTI. That was nearly 3 months ago and although i had two courses of antibiotics (Macrobid and Cipro) i've continued to have the painful bladder and urethra spams. I definitely don't have an infection any more, but have been left with this irritation which may or may not be IC (I'm praying that it's not, of course).

          A few things i've noticed and which may help you: the more concentrated (darker) the urine, the more pain there is. So it helps to drink as much water as possible, including during the night. It's far better to have to get up and pee a couple of times a night, without pain, than to suffer the next morning. I drink water fairly continuously throughout the day until about 8 pm. then right before bed i have just 2 or 3 sips. During the night, whenever i get up to pee, i have another 2 or 3 sips. Then as soon as i get up in the morning the first thing i do is drink a full glass of water.

          Secondly, you may have read about Prelief pills, which neutralise the acid in food and drink. Well, they are wonderful! I started taking them, two with each meal, about five days ago and i'm now feeling 90% better. I ordered them from the Internet but they are available in some pharmacies. You can find out where if you go to www.prelief.com. They give a list of retail outlets for each state.

          Thirdly, try following the low-acid diet as much as possible. Even just cutting out a few things has helped me. I have given up tea, coffee, cola and all citrus drinks except Sprite (which doesn't seem to bother me but everyone reacts differently).

          Fourthly, avoid cranberry pills or juice because it's acidic. I take D-Mannose pills instead. They perform the same function of stopping bacteria adhering to the bladder lining.

          I've also learned that i feel better in the afternoon, so i try to schedule the most demanding chores and tasks until after lunch. I'm fortunate that i can stay home and rest three days a week, and on the other days i make sure i have a bottle of water with me when i'm working or wherever i go.

          I've had some good advice from the people in this group and i'm sure you will receive lots of it too.

          Hang in there!


          ~jiriji~
          I'm sick of being sick. Fed up with all this autoimmunity/allergies stuff: migraines, eustachian tube dysfunction, asthma, peripheral neuropathy with polyneuritis, Raynaud's disease, acne rosacea, Hashimoto's thyroiditis, IBS (diarrhea type), IC, one deformed kidney, Von Willebrand Disease (a bleeding disorder), drug allergies, food intolerances, life intolerance! And besides all that, i'm missing my tonsils, my gallbladder, my uterus and ovaries... and probably a gazillion brain cells

          Comment


          • #6
            Originally posted by jiriji View Post
            Hi Shelley,

            Your tale of woe sounds very much like my own, although mine started with a confirmed UTI. That was nearly 3 months ago and although i had two courses of antibiotics (Macrobid and Cipro) i've continued to have the painful bladder and urethra spams. I definitely don't have an infection any more, but have been left with this irritation which may or may not be IC (I'm praying that it's not, of course).

            A few things i've noticed and which may help you: the more concentrated (darker) the urine, the more pain there is. So it helps to drink as much water as possible, including during the night. It's far better to have to get up and pee a couple of times a night, without pain, than to suffer the next morning. I drink water fairly continuously throughout the day until about 8 pm. then right before bed i have just 2 or 3 sips. During the night, whenever i get up to pee, i have another 2 or 3 sips. Then as soon as i get up in the morning the first thing i do is drink a full glass of water.

            Secondly, you may have read about Prelief pills, which neutralise the acid in food and drink. Well, they are wonderful! I started taking them, two with each meal, about five days ago and i'm now feeling 90% better. I ordered them from the Internet but they are available in some pharmacies. You can find out where if you go to www.prelief.com. They give a list of retail outlets for each state.

            Thirdly, try following the low-acid diet as much as possible. Even just cutting out a few things has helped me. I have given up tea, coffee, cola and all citrus drinks except Sprite (which doesn't seem to bother me but everyone reacts differently).

            Fourthly, avoid cranberry pills or juice because it's acidic. I take D-Mannose pills instead. They perform the same function of stopping bacteria adhering to the bladder lining.

            I've also learned that i feel better in the afternoon, so i try to schedule the most demanding chores and tasks until after lunch. I'm fortunate that i can stay home and rest three days a week, and on the other days i make sure i have a bottle of water with me when i'm working or wherever i go.

            I've had some good advice from the people in this group and i'm sure you will receive lots of it too.

            Hang in there!


            ~jiriji~
            Thank you so much for that information. Does it burn when you urinate? It doesn't for me, just the spasms. I did drink a Coke late last night which I usually don't do. I've slacked off on my water too. So far I've had 2 bottles today and I would much rather get up and pee 3 times a night then deal with the pain in the morning.. I will definatly try whatever advice I'm given. Thanks!!
            Looks like I'm an IC'er too

            Currently taking:

            Urised 1 tablet 4 x a day..My 3yo loves the fact that my pee is now blue

            Lexapro 10mg

            Comment


            • #7
              Originally posted by 2littlemonkeys View Post
              Thank you so much for that information. Does it burn when you urinate? It doesn't for me, just the spasms. I did drink a Coke late last night which I usually don't do. I've slacked off on my water too. So far I've had 2 bottles today and I would much rather get up and pee 3 times a night then deal with the pain in the morning.. I will definatly try whatever advice I'm given. Thanks!!
              Hi again, Shelley.

              No, i don't usually have burning, just pain and spasms. It's worse when i first start to urinate - almost like i can't do it - but then once i do it's a big relief. Then sometimes i will get a spasm about 15 minutes later when my bladder is starting to fill up again. Generally, the fuller my bladder is, the less pain i have. Other than that it's not too bad lately. At least it doesn't feel like it did a couple of weeks ago: like somebody reaching up inside me and trying to pull my bladder out through my urethra!! OUCH! That was even worse than the infection that seemed to start all this.

              Oh well, i guess it's one day at a time.

              I hope neither of us has IC but if we do, we're in the right place here.

              ~jiriji~
              I'm sick of being sick. Fed up with all this autoimmunity/allergies stuff: migraines, eustachian tube dysfunction, asthma, peripheral neuropathy with polyneuritis, Raynaud's disease, acne rosacea, Hashimoto's thyroiditis, IBS (diarrhea type), IC, one deformed kidney, Von Willebrand Disease (a bleeding disorder), drug allergies, food intolerances, life intolerance! And besides all that, i'm missing my tonsils, my gallbladder, my uterus and ovaries... and probably a gazillion brain cells

              Comment


              • #8
                I think Cindy is right -- you need to either push this doctor harder for a diagnosis, or find another. Unfortunately, doing a cystoscopy in the office doesn't rule out IC. Often, an IC bladder can look completely normal with just the in-office cysto; it takes a cystoscopy with hydrodistention in the operating room under anesthesia to see the classic signs of IC (glomerulations, petechial hemmorhages, and sometimes, ulcerations). During this test, your bladder is stretched much more than during the office cysto, so it would be very painful without anesthesia.

                Definitely check out our Patient Handbook to read about the diagnosis and treatment of IC -- http://www.ic-network.com/handbook. It really helps to be well-informed yourself, so you can make solid decisions about your health.

                and
                ****
                Jen

                *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.

                Comment

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