Has anyone had a cystoscopy and did it hurt?

[Bal1400]

What's involved in a cystoscopy

[Nbubz]

I don’t know if you’ve ever had a colonoscopy or a gastroscopy, but a cystoscopy is nothing compared to those! I don’t remember it hurting at all really. Occasionally a little uncomfortable, but that’s mostly from the pressure in your bladder (you have to drink a lot beforehand). They ask you to empty your bladder half way through (not in front of them!) and then they reinsert to see how well your bladder empties. Was very quick and pretty painless!

[Bal1400 in reply to Nbubz]

Hi thank you for yoyr reply, I have had had a colonoscopy before which I found uncomfortable! Glad it didn't hurt as that's what frightens me also don't want it yo upset my endo! Did it hurt once they re-inserted it?

[Nbubz in reply to Bal1400]

I don’t remember it hurting when they reinserted it!

[Bal1400 in reply to Nbubz]

Thank you that is reassuring to hear

[Jeg-1]

Hiya, I had one done last month. I was really quite worried about it, but it wasn’t as bad as I was expecting!For me, I first met a nurse who asked me lots of questions about my health and got me to go and do a urine test which she checked in front of me for any infections and pregnancy. She also checked to see if blood was present in the pee - which for me there was, but it was a very low level. This has been one of my symptoms and I have to say I was weirdly relieved by this as it made me feel a bit ‘justified’ to be there - but that’s just me as have felt for such a long time that doctors haven’t believed my symptoms!

I then had a meeting with a doctor/consultant in a different room and talked through my symptoms/issues. He listened and took notes but didn’t try to diagnose, he did talk through a few things it might be (including the suspected endometriosis). I then went to a separate toilet room to get changed into a gown and I also went to the toilet then.

The doctor performed the procedure with a nurse, and another nurse stayed up by me at the top of the bed and offered to hold my hand and spoke with me in a calming way. They cover you in a blanket which had a hole in it which exposed the vulva area - which although feels a bit embarrassing if you are a bit of a prude like me… I kept reassuring myself that they see this every hour of every day that they work as he performs this procedure all the time! They made me feel very at ease.

They put an anaesthetic wipe/liquid on and squirt some numbing liquid on so you don’t feel any pain and then insert a small camera which is a thin probe into your urethra. I can’t tell you that it was comfortable, but it definitely didn’t hurt. Just feels a bit strange. After about 5-10 seconds the sensation changes and becomes a bit less strange. They offered to show me the screen so you can see live what they are seeing. I wasn’t sure I wanted to but in the end started to watch - was very strange to see inside your bladder. Wasn’t what I expected and to be honest I hope it’s the only time I look inside an internal organ!! But you definitely didn’t have to see it if you didn’t want to!

The procedure only lasted a few minutes and he talked me through what he was seeing. For me he said it looked ‘normal’ so wasn’t suspecting it was anything else causing my symptoms which meant it might be endo or something else he couldn’t see and that he would send my results to my gynaecologist consultant to look at and go over with me when I next see him. (I’ve also just been for an MRI ).

After the procedure I got told I could go and get changed and have a pee. I was warned the first pee might hurt, and have to admit that it did. But it was definitely manageable pain - having suffered painful pees before with endo, it mostly just felt like that!

Afterwards I drunk lots of water on my way home and for the next few hours to make sure I peed lots as had heard this helps flush out any chance of infection. The next few pees did hurt but then this helped.

I did unfortunately end up with a urine infection, which I hear is very rare after these, but I am prone to these and so I don’t think this is normal - and I’m sure you won’t! But antibiotics from my gp cleared this up.

I would recommend taking the rest of the day off work if you can after your cystoscopy - you would probably be fine to go back to work. I worked from home as luckily I could, but I think you’d probably want to be comfortable and near a toilet just to relax yourself after.

I definitely was surprised at how pain free the process was and was over very quickly. I hope my honest account reassures you and doesn’t make your concerns worse. If you have specific questions please do ask and I might be able to help! Wishing you all the best with your procedure and hope that you are doing okay.

[Bal1400 in reply to Jeg-1]

Wow thank you for going through in detail with me, least I know what to expect now, I too get frequent utis which is annoying... I was worried that it wouid hurt that's good they put numbing gel on. I am taking antibiotics at the moment for a uti will I still be able to get it done? Not sure I woujd like to see my bits on the screen that wouid be frightening to watch 🙈 are you having any other side effects since having it done apart from the uti? Sorry for all the questions

[Jeg-1 in reply to Bal1400]

I’m not sure if you can have it done with an infection, I supposed they did the test before to make sure that didn’t happen… if I were you I’d go anyway and take the antibiotics with me that I was taking (or have just finished taking if recently stopped) and tell them about it when you get there. They can then decide what’s best. They’d probably do a urine test anyway to see if it was still present, as it may have gone already even if still taking the antibiotics. I don’t think I had any other symptoms from the procedure. It just hurt a bit when I peed for about a day. But then my normal endo bladder pain started. I get a feeling of not emptying my bladder and it generally just aches when I have a full or just emptied bladder and I get blood in my urine. It was hard to know when in the UTI started and the bladder flare up ended if that makes sense… but I don’t want you to worry that this might happen to you - as what I have read online is most people don’t get this after their cystoscopy. So I hope yours would be a lot less annoyance. To be honest though I have regular problems with my bladder and the pain I experienced wasn’t any worse because of the procedure - but whether it brought on that flare up isn’t certain.

Hope this helps, take care. And wishing you all the best!

[Bal1400 in reply to Jeg-1]

Hi thank you, mine is end of next week I am hoping the infection has cleared by then and the antibiotics would of finished. I will take the antibiotics with me do I can show them. And that's good they do a urine sample. Sometimes when I ferl I gave a uti it doesn't show up as an infection which is frustrating 🙃 it's difficult to tell is it an infection or the endo playing up.. Glad to hear you didn't have any symptoms afterwards I totally understand what your saying I get that awful feeling where my bladder is flared up and it hurts to pee. I am hoping they will tell me why I get these frequent utis I think I have endo on the bladder.. Also can I ask did you have to have a pcr test on the day to check for covid? Thank you for your advice it's been really helpful. I hope you are feeling better having it done

[Jeg-1]

I had to go to the hospital 2 days before my procedure for a PCR. I also got told to self isolate at home for 72 hours before the procedure (except for the trip to hospital for the PCR) my procedure was end of Aug (I’ve lost track of time!) so maybe the rules around it have changed since then though! I got a letter telling me what I had to do though and also a receptionist from the hospital called me a few days before to check. I’ve had it before too where I’m certain I’ve got an infection, but it hasn’t shown up as there when they do the test. It is really hard to know sometimes as the pain can be quite similar!

Hope it goes okay for you. Let me know how you get on. Take care and hope your infection does clear up quickly and you feel better soon.

[Bal1400 in reply to Jeg-1]

Thabk you I havent had any letter for a pcr test so am thinking things might of changed 🤔 I have had a letter for my appointment and a text reminder. Yes your right the pain is the same so hard to tell the difference between endo flare and uti maybe that's why some of the samples show no infection its very strange..

Thank you I will let you know how I get on and me too hate utis. I hope you are feeling better take care