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  1. #1
    ICN Member
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    Sep 2010
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    cystoscopy pictures? HELP Going NUTS

    Hello! Im sorry I am just driving myself crazy into depression. I am on here for my dad who is in his late 50's. He started off thinking his prostate had problems, he was told MULTIPLE TIMES that he just had some inflamattion but that was it and everything was ok. Then he started getting worse and worse, frequent urination, urgency, all the classic symtpoms of IC. I told him about IC and I sent him to aspecialist who has done studies on IC which I found on this website. He has been pheneomenal. However here is my part where I worry. He had a cystoscopy done in August 2010 and biopsy of his bladder. The results came back negative. This was done with the first urologist who just kept putting him on antibiotics and testing for utis. When we went to the second opinion Dr who specializes in IC and is a urologist( been seeing him for about 3 months) he agreed he had ic by gathering all previous reports or procedures and explained many dr do not know what IC is. Fast forward to this Wed, he scheduled him for a cystoscopy because he said he wanted to see it with HIS OWN EYES. When he came out to talk to me he told me "wwwwwow you were right you knew something was going on! He has severe inflamattion and im really going to have to put my thinking cap on for this one! I think he gets case of the month!" Im thinking to myself well geeze thanks. So he showed me the pics and I could see all the redness however he has white spots. They are not raised or look like tumors, I just wanted to know if anyone knows what this could be? I asked him piont blank..does it look like cancer? He said no thats not my first instinct but Im just going crazy over here going back and forth. I have looked at so many cystoscopy pictures and none of the cancer ones look like my dads with the swirly red and white spots. The res is the swirls...it almost looks like planet jupiter but with ****e spots all over. SOMEONE HELP! THANKS IN ADVANCE!!!!!!!!!
    Last edited by here4mydad; 12-09-2010 at 08:46 AM. Reason: *The first cystoscopy by the first Dr, who biopsies tested for cancerous cells and it was negative.

  2. #2
    ICN Member Briza's Avatar
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    Dec 2004
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    The biopsy that was done this past August most likely would've shown cancer had there been any, right?
    Was a biopsy done this second time?
    You are not a doctor, you are not trained to look at bladder photos and detect cancer. No reason to make yourself crazy. Biopsy results will speak for themselves.
    In remission since Aug 2009!
    New to IC? read this--IC Treatment and Diagnostic Guidelines--American Urological Association
    http://interstitial-cystitis-diet.bl...nosis-and.html
    *** http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"
    Treatments that helped my IC,VV,& PFD symptoms: pyridium, elavil, tylenol 3, ibuprofen, lidocaine gel and patches, cold packs, heating pad, diet, lots of water

  3. #3
    ICN Member
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    Jul 2008
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    White spots

    I have white spots in among all of the red on my cysto pics, and was told they were areas of scar tissue and where some of my bladder lining has worn away.
    There are also a lot of pale/white lines on mine that my uro said were actual cracks in my bladder lining. Maybe you could ask about that.

  4. #4
    Forum Manager ICNDonna's Avatar
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    I totally agree that nobody here is qualified to even guess what might be showing on the pictures. Is he scheduled for further testing?

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    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.

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  5. #5
    ICN Member
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    Jan 2011
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    I had something similar happen when I was DX. I don't think my uroligist believed me. His first words to me in the recovery room was wow remarkable! My pictures looked like mars to me solid red with a few white spots here and there. I've been dealing with it now about 7yrs. None of the meds have really helped, I take pain meds daily now and just deal with it mostly. Lots of people have had relief from the meds so tell your dad to give them a chance to work. Good luck I hope things get better for you.

  6. #6
    ICN Member
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    Sounds exactly like my cysto ... red is holes/lesions in the lining of the bladder and white is scar tissue/inflamation.

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