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  • Trishann
    replied
    Sammi, I know you are right about the urine. Maybe it is a hormone thing that starts doing the damage, I really don't know. I just hoping more can be done. If you hear anything else Sammi please let us know. I know you are up with medical things, and that is great. Thanks Sammi.

    Hugs, Trishann

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  • Trishann
    replied
    Jen, I did read your post after I wrote this and I am so sorry. I know it must be very frustrated to go through all of this especially when you feel like you can't be part of the decision making of your health, but the thing is, you can. I hope when you talk with your doctor he will listen to you and work with you. I hope something can be work out that will help you.

    I wish I could do something to make it better, but for now, the only thing I know what to do is to send hugs. HUGS, HUGS, AND MORE HUGS.

    Jen I might not be on for awhile. My daughter and my grandchildren is on her way home, which is a 14 hours drive. Once they get here I will be busy with them, a happy busy. She call us all through the night letting us know where she was. I just can't wait til they get here.

    Praying maybe someone will take more interest in this IC and really go after finding more answers. We have to find it in ourself to keep hoping.

    Sending hugs, Trishann

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  • sami4
    replied
    Adhesions, Endo and other stuff

    I highly doubt that the urine causes IC. The urine probably irritates the inflammation of IC.
    Some of the studies I have read show a mysterious correlation to endometriosis, Fibromyaligia and abdominal surgeries that traumatize the nerves (all surgeries and the adhesions they form are traumatic to nerves), then blood supply gets less and so on. Some IC has onset due to a severe drop in hormones or rocky levels of hormones. Estrogen is a lubricator and lack of it is like a wheel losing lubrication between parts.
    Sammi

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  • jen74
    replied
    Hey Trish,
    I have not heard of anything new as far as what is being done about this disease. But I am just like you, I want answers or at least a decent doctor who is willing to work with me and help me and unfortunately my doctor is not willing to do this.

    I am not sure if you read my earlier post, but I had a reaction to my instill on Friday and it made it where I could not pee at all the stuff out. Well, they had to cath the stuff out and sent me home with some catheters and told my hubby how to cath me if I had to. Luckily I was able to go a little when I got home and did not have to use the catheter. But the whole point is that I did have a reaction to the instill. It did seem to help with the pain after two days went by because I feel a little better today. I told the nurse I wanted to talk to the doctor and ask if she could omit a couple of the meds used in the instill as I had that bad reaction and could not pee. Well, the nurse called me back and said that the doctor said that I did not have an abnormal reaction at all. Now how in the hell is my bladder swelling and me not being able to pee that stuff out not an abnormal reaction! I would say that is abnormal.

    I mean I told the nurse that maybe the doc would work with me and maybe we could jugle the meds and maybe leave a couple of them out like the marcaine and the biocarb. "OH my Gosh" you would think I swore at her or something. She asked if I was a pharmacist or something since I was making suggestions about the drugs. That made me mad as heck! I was just using common sense I thouhgt. I mean one of those meds caused me not to be able to pee. She said that it is no big deal to cath myself. I told her that it is a big deal when you have IC and have PAIN!!

    I am just at my wits end here. She told me that she would tell the doctor what I said but does not think she will agree, and said she or the docotr will get back to me. (yeah right). I have yet to talk to the doctor herself and not a nurse.

    The scary thing is that she said the doctor was adament and said that if I did not do the instills, I would not get better and that there is nothing else for me that will work. Now I am scared and dont know what to do. I have a friend who see's a urgyne in one of the suburbs around not to far from where I live and I may have to make an appointment to see him. I just am so tired of doctor searching as I always get stuck with a bad one. I also dont feel like going through a buch more tests.
    Thanks for listening. Look at me, I just keep rambling on:0) sorry. Thanks again Trish . I hope there will be more help for this awful disease soon one day.
    Jen

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  • Moonheart
    replied
    This is why we need more funding and more research! You are right Trishann, absolutely right! You too Jen! That is why we are so fortunate to have an advocate in Jill. She is amazing and that is why I determined to find a way to help out and help get funding for this horrible disease. We need answers! The new statistic that every 15 seconds a new case of IC is diagnosed?! That is inexcusable! This disease is overwhelming our nation and our world and we deserve to know why. We want and need answers and it won't happen without money.

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  • Trishann
    replied
    Jen you are right about acid reflux do scar the esophagus, but I don't think the urine is what started the problems with the bladder wall. It is odd because when they did an ultra sound my bladder showed nothing strange. They only found sometime wrong by having a cytoscopy/hyro About 5 years ago when they did do the ultra sound why the bladder appear normal on the outside. How can a bladder only be stiff inside? I guess I am just upset because these other test was useless. I don't understand as being a doctor how one can not know sometime major was wrong and I don't understand why these other tests show nothing. I guess I am just full of questions today.

    I am like you, I wish more questions can be answer and that understanding of the process of why the bladder wall is being damaged.

    I think maybe I just need the peace of God of knowing what to do. I sure do need the peace in order to make a decision. There are so many different conflicts, just don't know for sure which way to go.

    I was hoping maybe more was being done to find out about IC. Have you heard any thing new?

    Jen, sorry you are having a rough time. I wish I could do something for you. Thank you for responsing to my questions. It is just one of those days. I guess we all have those days of questions?

    Sending hugs, Trishann

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  • jen74
    replied
    Hi Trish.
    I honestly dont think urology is that up on things. My gastro doc told me that the uro' docs are still living in the dark ages and are way behind. I tend to believe him after what I have been through with these different doctors.

    The scarring in the bladder is probably due to the chronic long term inflammation. Just like when a person has severe acid reflux issues, sometimes the esophagus gets scarred and causes dysphagia(difficulty swallowing), and then they have to have their esophagus stretched so the food could go down better. What they need to do is treat the inflammation before it gets that bad in my opinion. I was wondering if oral steroids would help. They are given to people who have chronic inflammation like with asthma, lupus, and other autoimmune disorders. I dont mean take them forever, but maybe at different intervals or when flares get really bad.

    I know it is not good to take steroids regularly, but if that is the only thing that will work, I think it is worth a try just to see if it would work. Not to take them long term, just to see if they would help with bad flares.

    As far as the urine causing the bladder to inflame, NO, I do not think that is the case at all. We have always has urine in out bladders and never has these issues our whole lives, so it is not that. I do believe it is all an autoimmune reaction where our bodies are fighting against us. That is just my opinion though. I wish they would find out what is casuing this and find a cure or at least something that will help us alot more than what they have come up with.
    Jen

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  • Trishann
    started a topic The Bladder

    The Bladder

    My daughter is going into Medical Lab. Tech. and she has been using my urine to learn. So far nothing has been wrong with it except for the blood issue.

    How can they say urine is what causes the bladder to get inflammed? Something else caused the bladder wall to deteriorate before the urine had anything to do with it. I know the urine can irritate it now because of the condition of the bladder wall. I was worry about my kidneys but that also came out find.

    I can't understand since it is the bladder itself and they can do a biospy why can it not be figure out what is going on. Yes I heard about the mass cells and the APF, I believe that is what it is, but why the mystery.

    If it was not the urine first why then does the bladder became stiff. I read that scarring is caused by inflammation as if the urine is causing it. But the bladder itself becomes damage before the urine becomes a problem.

    I don't know, maybe we can go on and on trying to figure it out but I wish there were more happening trying to find out what is going on.

    It seems like more doctors are fighting against us then they are helping, what is up with this. Years I had this IC, and was told nothing is wrong except alittle irritation. Boy, was they WRONG.

    Hugs, Trishann
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