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If I'm willing to pay anything, is there any way to get test for those urine markers-

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  • If I'm willing to pay anything, is there any way to get test for those urine markers-

    I can't keep going the way I am. My doctor did the hydro and didn't go through with it. He only put in 500cc and decided my bladder looked normal so there was no point in doing the hydro. I don't know if he's just messed up in his idea of what IC shows or if he just thinks there's no point - he did suggest it could do more harm so I think that's his mindset. Well I really don't have a uro anymore. And to be honest, I'm not sure the hydro means much and I don't think I WANT to put myself through that. It seems pretty barbaric to me. I also need a special anesthetic which makes it doubly hell. So I am at a loss. I had the anesthetic cocktail put in at Dr. Moldwin's office which he said is like a reverse potassium test and didn't feel better which he thinks you should if you have IC. None of my IC treatments have worked so maybe I don't even have IC. OR maybe I'm just unlucky. But I hate the fact that my family doesn't believe me. Someone once told me I could get this urine test done if willing to spend the $ - at this point I am. Does anyone know if I could do this? Please please help if you know *anything* I just want to die so badly I can't stand this anymore

    PS: there's also something terribly wrong with a certain part of my urethra for exactly a year now and the doctors don't care to pursue that either. My family doctor just commiserates with me about how he agrees the doctors don't care. I waited 5 months to see a urogyne in Sept. and she closed her practice.

  • #2
    You didn't specify which "markers" you are wondering about. I read your message, but hoped you would go back and clarify.

    Sending healing thoughts,
    Stay safe

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    • #3
      Oh, sorry...i guess it was the APF I was talking about primarily. I have printed a bunch of studies and there seem to be other markers but I guess this is the most researched..(I also don't have the patience to look for the studies now). I think it was Jill actually who said I could try to see if I could get it done and I guess she would know, but when I did a search on this site's message boards, I found someone saying they had it done, and then someone else saying it's impossible unless you're in a study and won't be for years. I also read someone saying they had PCR testing for bacteria which I would love to have done, and I would think that would also be hard to get done outside of a study so I don't know how he managed. I'm just so lost...I've been pushing and pushing for over 2 years and gotten nowhere (just sicker). I'm too tired to keep doing this and pressuring doctors who don't care, and I'm just tired of dealing with them and dealing with disease and just all of it. This is so not how I envisioned my life being at this age Well I guess it's not possible...sigh. It's just so hard to accept defeat but I guess that's what I have to do at this point..that's what my family doctor and everyone seems to think (i.e. that the available medical treatments just don't have an answer or anything to help so I should stop pursuing it). But how can someone resign themselves to living in this torture? I surely can't.


      • #4
        Hi LM:

        I wish I could help you in terms of getting your urine tested for APF, but as far as I know that's just being done for research purposes. Even so, you might want to try contacting Dr. Susan Keay or one of her colleagues at the University of Maryland School of Medicine - Infectious Diseases Dept. because she's at the forefront of this research.

        As far as the PCR testing goes, your doctors SHOULD have that technology available to them as PCR testing can normally be ordered for many different types of hard to find bacteria. So, is there any particular bacteria that you'd like ruled out - perhaps ureaplasma or mycolpasma??? If so, then ask your doctor to take a urethral swab and order the test.

        On a different note, LM, I think I recall that one of your doctors mentioned the possibility of your having a urethral diverticulum instead of IC, so why isn't that being ruled out? Aren't the tests relatively non-invasive? Also, I understand that you're somewhat worried about perhaps having endo - do you think that a lap might help to allay your fears? (I do understand your reluctance to go forward with a lap, but perhaps it might help???)

        LM, I just wish that there was more I could do for you in terms of giving you direction because I know that you've been having a difficlut time of it for 2 years. Let me ask you, did your doctor note that you have urethritis when he/she performed the cystoscopy?? I mean, perhaps you have urethral syndrome or something similar?

        Along that line, what, if anything, has given you some relief from your symptoms?? Have antibiotics been of any help and which ones have you been on?? Doxycycline (chlamydia/ureaplasma) and a 3rd generation cephlasporin like Cefixime(gonorrhea) should both have been tried.

        Lastly, I guess I'd like to know if the bladder/pelvic stuff is the only thing that you have going on or do you have more systemic symptoms? If so, you might want to have your doctor check you for autoimmune disorders like lupus or systemic infections like lyme.

        Wish I could be of more help. I truly hope that you will get some answers soon. Take care and know that we are all rooting for you to get some pain relief.



        • #5
          LM, first of all, I know how you feel! What meds are you on now? I have most of your same pain. Are you keeping a food journal and ridding your diet of all suspected foods? This makes life much more bearable for me. My bladder capacity is also normal. I had a Urodynamics study yesterday and after I urinated, they catheterized me and I still had another cup of fluids in my bladder! The pain is bad and depressing when you get no relief. Tell me what you are doing now? Don't give up.


          • #6
            I am so sorry you are getting no where with your doctor. I believe there is an Association of Urologists, my general dr mentioned. They amybe able to direct you to a IC specialist, worth a try.

            I know it is so upsetting when your family do not undertand. My husband tries very hard, but I don't think it is possible to understand what discomfort we live with if you can not experience it.

            Try ti get family members to look at this site, read peoples stories and see the devastating effect this condition has on people all over the country. When they see that other people feel the same, it may make them more sympathetic.

            I also wonder if I will ever get my life back, I am just married and should be having the time of my life. I am desperate to start work and make new friends in the states but I do not think I am going to pass a medical unless I lie, which i will not do. IC is so isolating, I can't believe they can not find a cure for me, although I am not going ot give up I will keep trying until I find a cure of some sort. I recommend you try and get the support of a specialist. I also have been told in the past I have uretheritis, and it was unbearable. I was given some antibiotics and it went away.

            Please do not feel alone, or abandoned by your family and dr's. You are not alone.

            take care



            • #7
              Hi LM,
              Do you have chronic uretheral burning?? You can have ic, but the burning you feel is part of the ic. Did you pursue other uro dr.'s??
              I also, have urethral burning that's unbearable i have suffered with it for 6 years, but was diagnosed with ic 11 years ago. I'm going to try Elmiron to see if i will get any relief. I understand what you're going through, please don't give up and try to get as much info as possible.


              • #8
                Hi LM,
                Do you have chronic uretheral burning?? You can have ic, but the burning you feel is part of the ic. Did you pursue other uro dr.'s??
                I also, have urethral burning that's unbearable i have suffered with it for 6 years, but was diagnosed with ic 11 years ago. I'm going to try Elmiron to see if i will get any relief. I understand what you're going through, please don't give up and try to get as much info as possible.


                • #9
                  I participated in one of the urinary markers study. They give you a questionnaire then test your urine. I asked my Dr. if I had any of the ones they were looking for. He said there were about 6 different ones in the hypothesis and that even he didn't know since it was a double blind study...he would know once the code was broken. I'm not sure when the study would end but I don't go to him anymore because he was a jerk. Another uro there who is a recognized IC research expert had told me that he thought there would be a urine test for IC within a year (he told me that in June). We'll see. :p


                  • #10
                    Hi everyone
                    Patrice, you've made my day. A urinalysis test for IC markers next June, maybe? YAHOO. I've been following this line of research too, esp. the APF factor and wish it wasn't taking them so long. It's hard to be patient when you have IC.


                    • #11
                      I don't know enough about urine markers to be of much help to you, but I hear the desperation in your posting and feel really bad for you because I have experienced that kind of desperation too. All I can tell you is that you WILL find something that will help you. At times I still feel total despair and frustration that the doctors have nothing to offer to help our symptoms. But very slowly I am finding some treatments that help on my own. I take Elavil and am experimenting with diet changes which can be a long and frustrating ordeal. I am also looking into what alternative medicine can offer and will try just about anything even if it seems a bit off the wall (I am trying theraputic essential oils now). Anyway, I guess my point is just please don't give up. There is ALWAYS a way to heal. It may be different for everyone and it may take a while to get there but it will happen. Please don't give up.

                      I hope you feel better soon. Cate