Abnormal Cysto

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Hope someone can help ease my mind Heres my story

Was diagnosed with I.C. 30 years ago. I’m a 56 year old female. Have had Hematuria and pressure, burning intermittent throughout the years. 2.5 years ago had gross Hematuria and had CT immediately after and Cysto 1 month later. Both were normal. Had not had any gross Hematuria since. Had some burning over the weekend and then gross Hematuria on Monday. Put on Cipro and bleeding stopped by afternoon. Sent urine for culture but not back yet. Had cysto today and it showed red inflammation throughout bladder. Urine was normal. Dr said to be on the safe side will biopsy next week. Should I be concerned about cancer or will cystitis or I.C. show inflammation in the bladder? Have any of you experienced this? Thanks!

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  • Posted

    Hi Sue. I'm sorry that you're having this to cope with. All of the things you mention plus infection, can cause the visible presence of blood and inflammation. They're doing a biopsy to rule things out but by your history I would guess inflammation due to the IC, with possible infection on top is to blame. That's much more likely than cancer so try not to worry! I'm surprised they didn't take biopsies when they did the cysto - unless, as in my case, they forgot! One thing to think about if you're not already taking it is HRT as bladder probs are often made worse by low estrogen - it made a big difference to me - I was told that the bottom half ofthe bladder is comprised of the same tissue as the uterus so is also estrogen receptive. I Hope the tests you have will be reassuring - i know what a constant worry it is and of course stress, we are told, is to be avoided!! Take care.

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    • Posted

      Thank you so much for your helpful response My cysto was in office today and he wants me sedated for the biopsies. Do you have your cystos in office? I tried HRT last year for a very short time but my migraines increased so has to stop I'm sure they would have been helpful

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    • Posted

      Hi Sue. I'm in the UK so they always do cystos under a general anaesthetic here - thank goodness! Sorry about your migraines - i get those too but the HRT didn't make mine any worse. I wonder if you might be ok with HRT vagifem vaginal pessaries as the estrogen in them is only absorbed locally.

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    • Posted

      Yes, its fun ! lol Have you had any gross hematuria since menopause? My culture came back negative so im guessing this round of bleeding is the old IC I do believe that is related to the atropy/ burning of all that area as well. Its painful in and out

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    • Posted

      Sue, I've only had gross hematuria once and it was very painful - I get micro hematuria a lot but usually when I've got a UTI on top of the usual! if tissue is red raw and inflamed stands to reason it will bleed. We all worry when we see blood but i heard that only about 8 % of bladder bleeding is due to sinister cause. Hope that's true! My urologist doesn't seem too concerned anyway. Are you being strict with your diet?

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    • Posted

      THANKS! I have been pretty good with diet this week since the bleeding lol Not so good before that-lots of diet coke and tomato products. I have been dieting since June so the diet coke was a treat Not very smart Actually the last time I had the gross hematuria I had been dieting for a bit too Maybe that throws my whole system off. I am down well below my target weight now so maybe I should be more careful. I have had micro hematuria on and off since my diagnosis 30 years ago Thats the reason I had my initial cysto I then went for a 10 years period without it and it reared its ugly head again

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    • Posted

      Hi Sue - DIET COKE!!! are you mad? lol! Just one would set my bladder off! Any fizzy drink inc water doesn't like me! I do find doing without tomatoes hard as i love them! But i find a small amount of organic tomatoes not too bad - I've heard that yellow tomatoes are lower in acid. It's easy to lapse on a strict diet - we're only human buy get back on the IC friendly diet immediately and let me know if things improve as I'd love to know!

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    • Posted

      I had my biopsy/Cysto last week and it went smoothly. Received results back this week moderate chronic inflammation. Praise God no cancer. I had no increase pain or bleeding after the procedure until yesterday (1 week later). After walking 5.5 miles my urine was bloody-pink. Seemed to subside after drinking water and by next trip to bathroom. I had just started back walking the day before. Bleeding Not near as bad as the gross hematuria I had 2 weeks ago-the reason I had to have Cysto. Not sure if bleeding was from the inflammation or from the Cysto. Any thoughts? If from the inflammation I wonder how often it will happen. I don’t go back to urologist for 3 months.

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    • Posted

      Hi Sue. Yes, you've been overdoing it! lay off the walking - after my cysto i was told rest rest rest! if you had a wound on the outside you wouldn't be able to ignore it - it's harder i know when you can't see the damage 😃 the bleeding will settle but the inflammation doesn't want to be jiggled around too much - stick to bladder friendly diet and give your body time to heal. I'm so glad it's nothing sinister but you must treat your poor bladder gently! Time and rest - take it easy and you'll heal quicker x

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    • Posted

      Hello,

      Looking for suggestions. As you know I had the 2nd Cysto with biopsy on October 10th. No pain or bleeding right after. I thought I was home free lol. Then 1 week later had some bleeding. Then noticed burning on and off. I had a culture done on the 21st. It came back essentially negative- (

      RESULT: Multiple organisms present, each less than 10,000

      CFU/mL. These organisms, commonly found on

      external and internal genitalia, are considered

      to be colonizers. No further testing performed) Since then I have had good days and some minor to modestly bad days of burning-mostly after I urinate. Yesterday & todat the burning is so bad-I’m miserable. I am using ice on the vaginal area and heat to the pelvis. I have been pretty good with my diet but Thursday I had about 10 ounces of Diet Coke and pizza. (Halloween) The burning then started during the night and then seemed much better for 1/2 the day yesterday. I only had about 12 ounces of water during the day and then yesterday afternoon when I urinated I felt like my urethra and skin was burning off and it hasn’t subsided. I also feel pelvic pressure. Since then I have been drinking a lot of water Could of the Diet Coke/pizza cause this kind of a flare? I don’t ever remember having it this bad before. Before the large amount of gross hematuria the end of September—I was drinking 24 + ounces of Diet Coke a day. I stopped it then thinking maybe that’s what caused the inflammation/flare/gross hematuria i just used an at home UTI test it showed negative for nitrates but the highest amount on strip for WBC's Im assuming thats pointing to IC being the cause would the 2 cystos in a week also cause worse flares? Any suggestions? Thanks!!!

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    • Posted

      Hi Sue

      It is my educated opinion that, the 2 recent cystoscopies plus the diet coke and tomatoes on the pizza have caused this - remember your bladder is raw and inflamed (hard to keep in mind i know when you can't see it but imagine a burn on your arm!) You might have got away with the coke etc before but after 2 ops it's expecting too much I think. completely cut out fizzy drinks and acidic food like tomatoes and citrus fruit and all caffeine (prob the coke had that in it too) and be kind to your poor bladder! it'll take a while but obviously keep getting urine tests done if it doesn't improve. for the pain you could try Azo as a short term option - only available in USA but also on Amazon. its only for 2/3 days use and purely for pain not infection. Personally I'd go back to your urologist if things don't settle after a couple of weeks.

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