Cystoscopy Experience - Way Better Than Expected! Interstitial Cystitis

Hi everyone. TLDR: I was extremely nervous about my cystoscopy, but it was TOTALLY FINE and no way near as scary as I was building it up to be!

Reading some of the reassuring stories on here really helped me. My experience was way better than I expected so I thought I would post about it in the hope of reassuring other people as well! It is a very strange kind of experience so it’s totally normal to be anxious, but believe me, I am such an anxious and sensitive person - If I can get through it, you definitely can!!

Before:

I was so, so anxious about this procedure, to the extent that I broke down in tears before I left for the hosptial. I can honestly say it was really not worth being so anxious about it! I think I was very nervous because I have suspected bladder pain syndrome / interstitial cystitis, so I’ve experienced a lot of urethral pain and I was worried that the cystoscopy would provoke a massive flare up and just be very painful. Also, a few years ago I had a very bad experience with a colonoscopy which I was told would be “painless” … painless my a**!! That experience really effected me because of some very unempathetic nurses who treated me like I was being a baby and didn’t listen when I said I was in pain. So overall, when someone said I had to have an “-oscopy” and that it would be “painless” - I didn’t believe them!

During:

I can just say that my cystoscopy couldn’t have been further from my colonoscopy experience. If I have to have another cystoscopy I really wouldn’t be worried about it. I can genuinely say that procedure itself was, for me, PAINLESS. I genuinely couldn’t believe it. Someone on here said it wasn’t as bad as a smear test, and I agree completely. I don’t even find smear tests that bad but this was easier than that.

I had mine done with the NHS in a London hospital. I think one of the nerve wracking things about it was, because of the way the NHS works, the cystoscopy took place in a hospital with doctors/staff that I had never met before. So I had no idea what to expect or if they would be nice. They were extremely nice and also clearly very experienced and calm about what they were doing. I did have a male urologist doing the procedure which I was okay with (they asked my permission first).

I asked them if I could listen to music using one of my AirPods whilst they did the procedure (so I could still hear them with the other ear). They said that was totally fine and that I could even watch a video or use my phone if I wanted - thought that might be helpful for others, if you need a distraction, you can ask to be on your phone whilst it’s happening. I was glad I asked that because it made me feel more in control and like they were happy to prioritise my comfort. I also told them straight up that I was extremely nervous, and I think they were extra careful as a result so I’m very grateful for that. I was glad I had the music, but it was actually over so quickly that it didn’t matter much. I just find music really helps me keep calm in stressful situations.

After I lay down on the couch they asked me to put my feet together and my legs apart. First they used a syringe to apply local anaesthetic. Very slight sting but basically couldn’t feel it. Then he put the scope in, but I genuinely didn’t even realise he had put it in!! I was quite shocked. I think I had the expectation that it would have to be sort of “pushed” in, like the urethra wouldn’t be wide enough so they would have to use force, but for me it wasn’t like that at all, I didn’t feel pressure or any pushing. It just sort of slid in, to the extent I couldn’t really feel it. The next part where he looked at the bladder was very fast, I would say about 90 seconds. He twisted the scope a bit and I could feel it slightly - it felt like having a slight UTI to me, slightly stingy or uncomfortable. But genuinely it was 1/10 on the pain scale, I wasn’t in any pain. When he took it out he was very gentle and I could sort of feel it coming out but again, not painful. I was SO relieved and surprised.

After:

The uncomfortable bit was the bit after, as many people have said, and that was the only time where I felt a bit like “I can’t deal with it”. After the procedure they ask you to pee, I was expecting it would be very painful and there would be blood … there was no blood, at all, so that was a relief, but after I peed I was in a lot of pain in my urethra area, a kind of intense burning or stinging pain, equivalent amount of pain to the worst UTI I’ve had (having had a lot of UTIs). I’m not saying that to scare anyone - you can get through it, especially if you’ve ever experienced a UTI l!! - but just because I wasn’t very well prepared for it! I was at the hospital alone and hadn’t taken any painkillers and there were a few minutes where I thought, I don’t know how I’m going to get home.

Next 24hr:

The pain actually passed much more quickly than I thought. I was in 6-7/10 pain for about 30 minutes and then paracetamol kicked in and it went down to 2-3/10 pain. When I got home and took ibuprofen as well, the pain was pretty much gone. By the next morning, I was peeing as normal with no pain. I was amazed! But if I did it again, a) I would have arranged transport home from the hospital beforehand, like someone to pick me up with a hot water bottle or an ice pack in the car and b) I would have taken a strong painkiller before the cystoscopy because I think that would have significantly reduced the pain afterwards. So that would be my advice!

Coping with the after pain:

If you have had UTIs before, then you will be well prepared to deal with it. But if you are having the procedure for another reason and you’ve never had a UTI, this is my advice for that type of pain:

• take paracetamol and ibuprofen in combination and it will totally knock it out. Ibuprofen really helps with the inflammation
• Drink lots of water
• Don’t avoid peeing because it hurts - just try to get it over with and know the pain will pass in time. You can pee in a hot shower to help the pain
• Hot water bottle or ice pack over the urethra really helps with pain!!
• Avoid tea, coffee, alcohol, spicy food or really sugary food for a bit to help make the urine less acidic
• I find that it is less uncomfortable when I’m lying down and not moving
• Distract yourself with a funny show
• Stay close to the toilet
• Wear loose fitting trousers and underwear
• It generally passes very quickly. Remember that it’s temporary and that you are very strong and your body is bloody great at healing!!

That’s just my experience and not meant to invalidate anyone who had a different experience. But just wanted to be reassuring to others who are anxious about this. You’ve got this!

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