Cystoscopy- what can I expect?: Hello... - Endometriosis UK

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Cystoscopy- what can I expect?

dollypop1994 profile image
4 Replies

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

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dollypop1994
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4 Replies
Miracle77 profile image
Miracle77

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.

dollypop1994 profile image
dollypop1994 in reply to Miracle77

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

dabba76 profile image
dabba76

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

Catness profile image
Catness

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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