Hi, any similar stories?

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Hi not sure if this is the right place to post but here goes… I’m 55 mom of 3 and a handsome pug! After what feels like a year of constant cystitis and 7 rounds of antibiotics, I started getting alot of low stomach pain and the urge to wee and the panic of finding toilets anywhere I go is becoming all controlling! My gp has finally referred me on the 2 week urgent possible cancer pathway and I’ve got a cystoscopy on Tuesday. I had a hysterectomy last year so the finding of blood ( not much) on a couple of occasions Is really worrying . I’d this similar to anyone r else's journey? Thanks xx

  • Hi and thanks, can I ask what your symptoms were before you had the cystoscopy? Jx

  • Jut a very reddy bloody small wee before work, then later at work a pinky wee and that was the only noticeable symptom in my case. No visible blood (hematuria)  after those 2 episodes. Went to the Doctors and was referred for 2 week wait suspected cancer as blood can be one of the early signs and I also finally told the doctors my dad died of hereditary bowel cancer at 54 and because of that I’m at risk of that. 

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    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Thanks for sharing. Jx

  • No problem, the only other thing I can really say is try not to worry or overthink things at the moment. It is our nature to worry and think the worst, but until you have some concrete evidence there is something to really worry about just try to not worry.

    Easier said than done I know but it’s pointless and not helpful worrying about what might be until you have some answers.

    It can happen for no reason as well getting blood in your urine. 

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • Thanks. I’m a worrier! Only a few hours and I’ll be having my cystoscopy. I’ll just be glad when it’s over. I’ve probably got myself all worked up over nothing. 

  • Fingers crossed it is nothing to be concerned about, but what ever happens people are here for you. 

    ________________

    My name is Simon. But Si is also fine, in fact you can call me anything you like it’s only a name after all Joy

    Much love and hope to everyone past future and present. 

    I also hate autocorrect and hope people can make sense out of my posts when it changes half the words I type.

  • How did it go yesterday? x

  • Hiya. Thank for asking, the procedure was really quick, no cancer, just a bladder full of tiny fluid filled cysts. The experience however was horrible, the guy doing the scope was quite rude, he said no cancer and nothing we can do for the cysts, there was a red patch and I asked what it was and he said nothing. I asked where the blood is coming from, he said no idea sometimes it just happens take cranberry pills. Of course I’m so relieved that it wasn’t cancer but I have no answers, I asked the nurse at the end, what about the pains and the frequency and the persistent cystitis, and the blood which they saw in the urine sample they took… she was so rude… she said maybe it’s lifting or going to the gym! ( neither of these things I do), I left quite upset. But thank you again for asking x

  • Hi

    It's shocking how you were treated

    When I had my first one she said well you know you have bladder cancer don't you.  It never crossed my mind that it was cancer and I was so shocked. 

    No bedside manner at all.

    I'm glad for you that it's not cancer but it doesn't help you going forward

    I really hope you get some help

    Love Tina x

  • Hi,I’m sorry you had a bad experience.I think you need some biopsies as there are different types of cystitis that can cause the symptoms you are getting.Red patches can bleed and that may be why you are getting blood in the urine.It really isn’t good enough to be treated in this rude manner.Do you have a follow up appointment.Push for answers as with a diagnosis there should be some treatment available to help.Love Jane x