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Cystoscopy done today, diagnosis is unclear...

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  • amy09
    replied
    I believe it is called Anti-proliferative factor or something like that. I just read that it's a substance or something that keeps cells from repairing themselves. Don't quote me though.. I just remember reading that they had found that in a high number of IC patients' urine.

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  • sailawaygrl
    replied
    They are working on a test that will work by simply testing our urine. I am not sure of the details but it is something that is in our urine that is not in other people's urine that don't have IC. I don't think this test is too far away from use in offices.

    Maybe someone else will know more about it and post.

    Sandra

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  • cmclien
    replied
    It is very unfortunate that there is not a fairly simple test like the cystoscopy that will reliably diagnose IC. I've been taking the Harvest Aloe Vera for about a year, I am unsure that it helps or not but I keep taking it just in case I would be worse without it! I thought it definitely helped for the first 6 months but the last couple of months I have symptoms again no matter how much I take of it. It is so expensive so I should probably just go without it when I get to the end of my 4 bottles and see if there is a difference.

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  • ceebee
    replied
    Stupid Cysto

    I too can relate to all the frustrations around cystoscopy. I had one three days ago by the same doctor who diagnosed me 15 years ago with IC, and this time around he said my bladder looked fine. ARRRGH!! It is not in my head and I know how I am feeling. I think I am going to get referred to another Urologist. I really would like to see one in B.C. in Canada. I do not have to wait another 4 months to get in. I am so frustrated!! I was able to empty my bladder after the procedure but as the days go by, it seems like I am still retaining and I feel worse than before. I guess I need to send in my pee for another urine culture. I am already on antibiotics so I am unsure if this is just a reaction from the cysto or a new bladder bug. I have so had it!!! Never again. I desperately need a new doctor. I am taking Desert Harvest Aloe Vera, hopefully this will help. I just needed to vent thanks for listening.

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  • bob04951
    replied
    Will just say we were lucky ones. Doc did the exam in office and put it up on the monitor for us to see, and although Bob was going through the ceiling it only took a few seconds. All he said was "Wow, you got it bad." And did the PST at the same appointment, but gave him a real good rescue instill. So some can be diagnosed this way. Glad we did not have to go through any more, but it is sometimes necessary. Wish everyone could have their DX as easily as we did. Although his IC did get worse after all that, a coincidence, will never know. Hope you all who may not be diagnosed in full really don't have it, but if you do, don't despair about it. Do your research and watch your diet. So very important. Take care all. Jill, wife of Bob

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  • jleblanc
    replied
    I agree that if you can find a treatment plan that works for you WITHOUT having to do a hydrodistention, then by all means, go for it! I so wish something would have worked for me, but nothing did. At that point, we decided to go ahead with the procedure to see if I would get any therapeutic benefit from it. Unfortunately, I did not; I did, however, get a very clear picture of my bladder, and it is a mess. This became very helpful when my only other course of treatment was to control the symptoms, and also it gave me a definitive answer-there was no doubt that IC is causing my symptoms. I do know that some have relatively normal looking bladders under distention, and still have a diagnosis of IC. I guess for me it was important to have the visual. I will say that it was a rather difficult recovery for me.
    With all that said, put it off for as long as you can if you have found something that is working! For me, all that is left to do is to control my symptoms, and that includes pain management, a route that initially I did not want to take, but am now glad that I have!
    Good luck!

    Leave a comment:


  • ICNDonna
    replied
    Cindi, I can relate --- my mother and her peers always spoke (in whispers) about "female problems" if a diagnosis was anywhere between armpits and knees --- and even when I was a young adult, the conversation halted when I came in the room. I don't think they thought I knew what body parts there were in the "female problem area."

    That said, I think you have found a physician who is willing to work with you towards finding a diagnosis and treatment plan that works for you.

    Sending encouraging hugs,
    Donna

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  • cmclien
    replied
    Hmmm well that IS interesting. I emailed my doctor yesterday to ask about the potassium sensitivity test that someone mentioned here. He said when I go back in 6 weeks we will see if I'm still having discomfort, (I hate to call it pain, as much as a terrible discomfort when I sit and my bladder is maybe half full, I think of pain as on-going and sharp which this is on and off and not sharp). If I still am having the mild pain we will possibly adjust the vesicare and he would consider the potassium test but wants to put the operating room procedure off if possible if we can come up with some viable solutions without it. I do see his point and find it maybe refreshing in that he wants to take care of me but doesn't want to do more then what is really necessary as there are always risks of anesthesia and the aftermath of pain of having the bladder stretched.

    I appreciate all your input! Its very nice to have found this site where others know what I'm talking about. I don't know anyone else who has these type of pelvic issues except perhaps my mother who will be starting the interstim trial soon. She though is not easy to talk to about these issues, maybe her age but she doesn't like to discuss female issues.

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  • ICNDonna
    replied
    My bladder looked normal and healthy during the office cysto. When it was distended under anesthesia, the IC became apparent, including the ulcers that weren't visible without the stretching.

    Donna

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  • jleblanc
    replied
    Just my 2 cents worth-my bladder has ulcers, sores, cracks, scar tissue and bleeding, NONE of which showed up during the in-office procedure. It was not until I had a hydrodistention under anesthesia that my IC showed up-it was then very apparent. So, not to argue with a doctor, but my bladder looked perfectly healthy too; they almost always do.

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  • Briza
    replied
    Cindy it sounds to me like you have a doctor who uses a conservative approach and is willing to work with you to decrease your symptoms. He sounds pretty awesome to me! Hope you get to feeling better.

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  • cmclien
    replied
    My doc said the cystoscopy alone will diagnose obvious cases of IC where there are sores or bleeding etc. He said color of the bladder is indicative too and he thought mine looked really healthy. He did say that I could have mild IC and it would take a hydrodistention to see signs of that but he just doesn't feel they are necessary. I guess if the diet, meds and bladder training don't help then we might be going there but I'm hoping not!

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  • ICNDonna
    replied
    Sandra is correct. An office cysto will not usually diagnose IC. I do think you have found a doctor who will work with you to help you feel better.

    Warm hugs,
    Donna

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  • sailawaygrl
    replied
    If you had your cystoscopy done in the office I am assuming you were awake? IC typically only show on a cystascope with hydrostention, meaning they stretch your bladder with water. You have to be put to sleep for this or it would be excruciating. From what I know, IC can't be ruled out with an in office cystascope.

    Sandra

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  • Linda May
    replied
    Ic

    I wish the best for you and pray things will be allright. Let us know how things go for you after you see your uro.

    Leave a comment:

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