Cystoscopy- what can I expect?

Hello ladies!

I've had to see the GP several times in the last couple of months as I have had a bad urinary/kidney infection that hasn't gone away, despite 3 courses of antibiotics. Had an emergency appointment today as things got worse last night, & I was in such bad pain & it reduced me to tears when I tried to go for a wee. The doctor told me that he thinks this may now be to do with the endo because the antibiotics havent helped & he has referred me to the urology team at my local hospital & wants them to perform a cystoscopy (camera in the bladder) to see if the endo is inside my bladder (i have been diagnosed with stage 4 endo on my uterus, ovaries, fallopian tubes, rectum, bowel (a colonoscopy in september also confirmed the endo was inside my bowel) pouch of douglas, the outside of my bladder & abdominal walls, as well as polycystic ovary syndrome, adenmyosis & adhesions. To be honest I am pretty frightened by the idea & would just like to know if anyone has had any experiences of a cystoscopy & what happens ect

Thanks,

Jes xxx

4 Replies

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  • I hsve had s cystoscopy but not for endo and it wasn't an unpleasant experience. It's sounds by your symptoms that it is needed. Hopefully you won't wait too long. Can o adk what led to the colonoscopy? I'm wondering my bowel is affected by the endo hence asking the question.

  • Thanks for the reply hun. I had the colonoscopy because I was having awful bowel spasms & was bleeding when I went to the loo. They'd suspected it for a while but thanks to certain supposed "specialists" I ended up going through months of being fobbed off & passed from one doctor to another before they investigated it.

    If you dont mind me asking, how come you think your bowel ia affected?

    Xx

  • Hi Jess

    I had a cystoscopy a couple of years back. I was very nervous but can honestly say it was a piece of cake. The doctor and nurses talked to me the whole way through, I'm sure it only lasted 5/10 mins max. I even went to a zumba class a couple of hours later.

    If you have had a colonoscopy then this will be a walk the in park compared to that.

    Good luck x

  • Hello,

    I have had a flexible cystoscopy which for me was particularly unpleasant however, looking at the replies you have already got, I seem to be in the minority and I don't want to say anything that may dissuade you from having it done as it was a vital step in my diagnosis.

    At the beginning of my journey to be diagnosed with endo, after my flexible cystoscopy, I paid to see a private consultant as at that time my symptoms were pointing more to ovarian cancer than anything else and the NHS waiting times were too long. My consultant was a specialist in endo and also urinary tract issues but at this point I thought that my bladder issues were unrelated as I didn't really know what endo was, and though I had my cystoscopy a couple of years previously, no body could explain my symptoms.

    During my first half hour consultation with the private consultant, she immediately suspected I had endo and interstitial cystitis (if you are not familiar with this disease it may be worth having a google). During my first lap I had my endo confirmed, stage 3 - 4, and she also performed a full bladder distension where (under general anesthetic) the surgeon pumps water into your bladder to 'stretch' it past normal human tolerance - hence why you need to be asleep. Since I have had this procedure my bladder and urethra discomfort are so much better. Unfortunately interstitial cystitis is again, like endo, incurable but there are ways to manage it. I have found that the endo diet has actually helped my bladder symptoms a lot as if I am having an endo flare up it would often lead to a bladder pain flare up. My symptoms for my bladder are just like having cystitis 24 hours a day but by making some diet changes I have learned to manage them.

    If you have any questions about IS please message me and I will be happy to answer them :) xx

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