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 a warm welcome to the community. Your story will be familiar to many here. Ladies in particular are often treated with antibiotics before being referred. The positive now is you are due a flexible cystoscopy which should show if anything is going on in your bladder. A fairly short procedure. Can be a bit uncomfortable but usually painless. You should be able see for yourself on screen what is going on. Hopefully some of the ladies will be along with a female perspective on the procedure. If it does turn out to be BC, then be aware it can be treated successfully. Lots of experience here so feel free to ask anything. Best wishes.

    Best wishes to All,   rily.

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  • Thankyou so much for your reply and kind words 

  • Hi Jellyfish55,Welcome to our friendly group.Sometimes you can get bleeding from red patches in the bladder.If you have had a lot of urine infections your bladder lining is probably quite sore.The cystoscopy will help you get some answers.It’s a quick procedure.Let us know how it goes on Tuesday.Best wishes Jane x

  • Hiya, thanks for the reply, the last two tests on my urine that the gp did didn’t show any infection present which is weird because the feelings are just the same as cystitis. I’ll be glad when the test can tell me what’s going on, I’m so uncomfortable and sick to the back teeth of going to the loo!! Thanks Relaxed

  • I can empathise. I had Interstitial cystitis from the age of 20-58.Latterly I spent most of the time in the loo or looking for one.Hugs Jane xx

  • Hi Jellyfish55

    I also have had a hysterectomy, so when I saw blood one evening I contacted my GP via e-consult and was put on 2 week cancer pathway

    The following week I was booked in for a flexible cystoscopy, which I find totally painless

    I could see pink things on the screen and it was confirmed as bladder cancer, and the tumours were removed a few weeks later

    The cancer had not grown outside of the bladder and was superficial

    It is a very worrying time, but the sooner you get some answers the better you will feel

    As Rily says BC is very treatable these days

    Take care

    Much Love, Tina x

  • Hi Jellyfish55 

    I haven't had a hysterectomy but did suffer from blood in my urine, UTIs and multiple courses of antibiotics over 7 mobths before I actually got to see my GP who referred me on the 2 week cancer pathway. The cystoscopy was quick and painless, just slight discomfort, I had an all female team which helped to alleviate my fears. I saw a tumour on the screen which was measured as 3cm then a follow up CT scan showed a second 1cm tumour. After 2 weeks I had a TURBT surgery to remove both the tumours and a second TURBT 4 weeks after the first to confirm the grade and stage of the cancer. As others on the site have said, Bladder Cancer (if that's what you have) is treatable.

    There is such a lot of support given from this lovely group. Stay in touch on the site and good luck for Tuesday.

    Sending love and positive vibes Sparkles️ 

    Ade xx

  • Hi and welcome as others have said. You are getting checked out fairly quickly so that is good, I had a 10mm tumour found during my cystoscopy.

    The next few weeks were a whirlwind, appointments, ultrasound, CT scan and fasttrack 2 week wait cancer referral, then rigid cystoscopy TURBT under GA. 

    Lots of pain in my case but I got through it all including today having my stent removed via cystoscopy, which is another story in general chat.

    It was diagnosed as Grade 2 low transitional cell carcinoma of the bladder. In my case caught very early and has been full resected, sadly it does mean constant checkups regularly for any future reoccurrence but acting fast at the sign of any trouble is good. 

    it certainly hasn't been an easy ride but I also have it much better than many on here, but the people on here are so lovely and helpful and caring so you will never be alone. Ask anything no matter how silly you feel it might be and hopefully someone can give you some advice.

    It is also true that everyone’s journeys while similar may be entirely different from pain and or treatment etc.

    so I wish you best with it and the best positive outcome for you.

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