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  • Yet another sad story

    Hi everyone,

    I have been in and out of this Forum since my diagnosis in 2005. I am still struggling to accept that I have this disease. Whenever I flare-up, I get desperate, go to the doctors, order new supplements, change my diet, etc. Then mysteriously things get better and I start feeling like I'm a normal person again. A few beers, tomatoes, pieces of chocolate later...well, you know the story.

    I first had this disorder in the late 1970s, when I was in my early 20s. I had been living in the Middle East and had just recovered from a life-threatening bout of typhoid fever. When I returned, the IC hit. Of course, I wasn't diagnosed with anything and was told that it was all in my head. I remember leaving yet another doctor's office in tears, and feeling as if my life was over--no more sex, traveling, a good night's sleep, or days without pain. Then, mysteriously, the condition remitted, and stayed away for 35 years!!

    In 1993 I had the sudden onset of fibromyalgia, but with the help of a great doctor it was brought under control. I have been taking Ultram and Lodine XL for this condition since 1995. I am lucky that I found a combination of meds for it that works. Of course, now I'm wondering whether the chronic use of these meds triggered or worsened my IC.

    The IC came back in 2005. At first it was a minor annoyance, but it's gotten progressively worse. I do not have the condition under control yet. I've tried various supplements, acid reducers, Algonot products, Aloe Vera, ad nauseum, basically everything for sale on the IC website. Nothing has really worked. I know of some dietary things that are sure to cause a flare (acidic drinks, booze, tomatoes, vinegar, almost all fruits). I take Oxybutin 20 mg a day; without it, I go into instant flare. I'm not taking anything else for it right now except for OTC Pyridium, which doesn't help severe flares.

    Most of the time I live in a state of low-level misery. I can work and have sex sometimes, but my boyfriend has to put up with my constant peeing. I can't imagine living with a man and having a normal relationship. Sometimes weeks go by when I barely function due to a flareup. I routinely pee 8 to 12 times a night. I wear pads every day and adult diapers when things are really bad. I am constantly pushing and straining to empty my bladder. I cannot hold anything in there for even a moment due to excruciating pain. When I'm flaring I will be pushing out pee every 10 minutes or less. Naturally, I am now getting lower back pain.

    I have had very little luck with doctors. I live in LA so I have access to some of the best, including the ****urologist. I am very disappointed in my treatment at UCLA thus far. The last time I was there they did a cystoscopy on me in the office with no anesthesia, and I was screaming in pain. They told me that they couldn't find anything. When they were done I could hardly walk and there was blood all over the table. They treated me like I was a nuisance and I had to crawl out of the office in severe pain. The only thing that seemed to interest them was when I told them that I had blood in my urine. My doctor subsequently ordered thousands of dollars' worth of tests, MRIs with contrast, CT scan, etc., etc. Just my copays were over a grand. I haven't gone back for the results because I'm so disgusted with them over there.

    I had a more thorough cystoscopy under anesthesia back in 2005 and that doctor found Hunner's ulcers. That doctor, unfortunately, was one of those types who gets mad at you when you don't improve. He basically cut me loose. So I ended up at **** and I'm not getting anywhere. They have nothing to say to me when I ask, "why would there be ulcers then, and not now?" They want me to take Elmiron but I took it for years without much change and it would cost me $175 for a month's supply.

    Anyway thanks to those of you who have read this sad story. I hope that someday I will find the right combination of meds, a good doctor, the right supplements, etc., to at least get this thing under control. I am so sick of being in pain, wetting my clothes, and feeling out of control.

    Best wishes,

    Victoria
    Last edited by ICNDonna; 06-10-2007, 03:40 AM. Reason: Negative comment about specific physician group.

  • #2
    Wow Victoria, it sounds like you're having a horrible time. I would try looking for another urologist. Any uro that knows anything about IC should know that an in office cysto won't show IC unless is really horrible. In most cases they need to do the hydro/cysto which is probably what you had under general in 2005 that showed the hunner's ulcers. I hope that you get some relief 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


    • #3
      HI Victoria,
      I'm so sorry for you and so sad about your story. Unfortunately so many of us have very similar stories and horror stories, and A great majority of us feel the desperation you are feeling about the medical profession. It's so hard to find a good doctor that really cares about your pain and how you are feeling. I think that they just get so frustrated at trying to help us that they then just disregard us in return. Having no regard for what that does to us alone! I'm sorry for what your going through and I really hope that you can find someone soon who will help you and listen to you. Unfortunately I don't seem to have much luck in that area myself. But there are many of us who can relate to exactly how you are feeling, so hopefully it will help alittle just to know that I really do understand, and can really share your frustration and desperation.
      Good luck to you,

      Kari
      Kari

      I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

      Comment


      • #4
        Hi Victoria,
        I would at least want to find out what the results are of all those test you had done.You should contact that doctor and have him tell you the results.You never know,you could have some stones.
        I had a catscan about three weeks ago and im in suspense as to what they may have found.Im going to my primary doctor thursday to find out.There supposed to call you but you never know.They get real busy and might have forgotten.Ive had that happen to me before. Here in Miami its a busy city like la.
        Its sounds like the ic is progressing.I know what you mean about the cystoscopy.They never find anything.The doctor here failed to mention that you need hydrodistention to reveal the ic or ulcers.I knew this.They just want to see if there are any more problems inside the bladder other than ic.The lidocaine is never enough to kill the pain.The last time I took a Valium before the exam and it made a big difference while they were doing it.You may want to ask your doctor about taking something.
        Regards,GoldSeals
        54 year old male
        Diagnosed with IC in 1994
        Had symptoms since 1992
        Three cystoscopies.One biopsy with hydrodistention.
        This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
        Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
        Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

        Comment


        • #5
          An office cystoscopy will not usually diagnose IC, but is part of the "ruling out" process to rule out other causes of your pain. My suggestion would be to go back to the urologist and ask about treatment options. It would also be a good idea to have your records forwarded to that doctor showing that you have an IC diagnosis and hunner's ulcers (which are not usually visible during an office cysto). I suggest you let your doctor know you are having a problem urinating. There are medications that will help relax your muscles so you can go without straining. Straining and pushing will only throw you into a vicious, painful cycle of straining, which increases the pain, which causes more straining, on and on. It's NEVER a good idea to strain.

          When I had my first office cysto my bladder appeared to be normal and healthy. When it was distended under anesthesia the IC became apparent.

          The Patient Handbook at http://www.ic-network.com/handbook will help you learn about treatment options.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            I agree with the other gals.
            hope you start to feel better soon
            'The will of God will never take you where the Grace of God will not protect you.'

            Comment


            • #7
              "quote Tigger_gal

              I agree with the other gals.
              hope you start to feel better soon"

              Well,Im not a Gal. ,but im here to share information with everyone.Maybe we can find a cure one day
              Regards,GoldSeals
              54 year old male
              Diagnosed with IC in 1994
              Had symptoms since 1992
              Three cystoscopies.One biopsy with hydrodistention.
              This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
              Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
              Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

              Comment


              • #8
                Thanks y'all

                Thanks everybody, for the kind words. I started feeling better today ... this is what usually happens to me with flareups. I have sudden onset and dramatic remission. I did make appointment to go back to my current urologist and I am going to have them sent my records from my previous urologist who found the Hunner's ulcers. I have a feeling they did not believe me at UCLA when I told them about those previous findings. I didn't know the differene re: the hydrodistention vs. office cystoscopy, and this was really bugging me. So thanks for clarifying that for me.

                I know that pushing and straining is making me worse. Of course I've told them about this every time I've gone, but it falls in deaf ears. This is supposed to be one of the top urology practices in the entire country. I don't get cranky, I'm assertive but not unpleasant, so I don't understand why I am getting the royal runaround.

                I am thinking about trying the MSM, Querecin and Glucosamine that I read about here. I am pretty much open to trying anything, including a new urologist. I am going to go back there are try to make it work, but I'm not real optimistic. I think that ultimately I am going to have to deal with this myself with natural remedies and dietary changes. Thus far that hasn't worked and I keep running back to the meds, but I keep hoping that I'll find a way to manage this situation.

                Best wishes,

                Victoria

                Comment


                • #9
                  hopefull

                  Originally posted by GriffsMommy View Post
                  Wow Victoria, it sounds like you're having a horrible time. I would try looking for another urologist. Any uro that knows anything about IC should know that an in office cysto won't show IC unless is really horrible. In most cases they need to do the hydro/cysto which is probably what you had under general in 2005 that showed the hunner's ulcers. I hope that you get some relief soon.
                  Hi sorry to hear what you have gone through sounds like me took me awhile to find a good Dr.but I have but I stlil have bad flare ups stress doesnt help where can you go so theres no stress also you have to watch what you drink and eat think I think I would learn from it right now its real bad just waiting for my next hosp visit another week good luck they says theres a patch you can wear but my Dr hasnt mention that one take care

                  Comment


                  • #10
                    Hi understand the pain is bad Im one of the bad cases as well of IC all you can do is take your meds and watch what you eat and drinkand live stress free funny ah maybe a trip to mexico wouild do it take care

                    Comment

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