They lied! Did YOUR cystoscopy hurt?

[Chancery]

Hi, I just had a cystoscopy today for the first time and all the leaflets and videos and - I want to say - propaganda say that it might hurt men, but that with women it was just 'discomfort'. Some of them don't even admit that. Well THEY LIED! At least for me.

From the very first touch I about leapt off the table. I don't know what it was but it felt as if I had been punched in the urethra. This was before numbing gel had even gone on/in. I'm not sure if they maybe put some kind of catheter in there for the gel? But I'd been told by someone who'd had a cystoscopy that they use an anaesthetic wipe. Hell's bells, if that was a wipe it was the sorest one I've ever had. Then we had the gel going in and then the camera. There were three 'events' and all three hurt. It didn't help that it was a student doing it and she had no bedside manner at all, that I could feel. The doctor was saying to me, 'Push your bum into the bed and take a deep breath, just relax' and it took all my strength not to yell back 'HOW AM I SUPPOSED TO F***ING RELAX WITH SOMEONE PUNCHING THINGS INTO MY PEE HOLE!!!" if you'll pardon my French.

I was holding onto the bed and groaning 'Holy mother of God' every time, unhelpfully snapping my legs shut, but once the camera was in, it was just uncomfortable, Ditto it coming out.

The whole thing was traumatic as I hadn't been warned that there would be PAIN. Yes, pain. I felt ashamed and embarrassed afterwards, as if I was overreacting and everybody else breezed it.

Anyone else had a traumatic/painful cystoscopy. I'm just venting here but I'd love to know I'm not alone. At the moment i feel like both a failure and a freak of nature.

[gbeam]

I had a similar experience. I found it extremely painful throughout. It was more than a little discomfort and I was very upset and angry afterwards.i spoke to a nurse and told her that I had been completely misled, by being told it would just be a little uncomfortable. She said it is gor most, but a few people find it really painful. So you are not alone. Sorry to hear you have been through such a traumatic experience.

[Chancery in reply to gbeam]

Thanks, gbeam, that's very reassuring, and can I say I admire you for speaking up about it. I felt terribly depressed coming home and it lasted all night. It was only today, going over it for the umpteenth time, that I realised that being depressed probably means I was actually angry. I was angry about them just dropping a student doctor on me without asking. I thought they had to ask your permission, but twice this has happened to me now. I think I need to write to the NHS and clarify this because if you are allowed to refuse students practicing on you, or others being present that no-one has asked you about, then I would have refused to have the student. I know they have to learn, but frankly she could learn on women who have had cystoscopies before and know they are okay with them. There must be plenty of those.

I was also angry about the lack of warning as they did each stage. I was lying flat and couldn't see what was going on so each new thing felt like an assault, coming out of nowhere. Anyway, in future I really am going to be more assertive in these settings. I'm sick and tired of coming out of hospitals feeling much worse than when I went in because some doctor has ridden roughshod over me.

[Gen89]

Sorry to hear about your experience. My cystoscopy was just a bad ouch when the catheter was first put in but it was momentary. After that it was fine pain-wise. But I found the whole experience stressful as the consultant and the nurses were so unfriendly. I walked into the room and there were about five people there and not one of them said hello or smiled. My consultant had no people skills what so ever. I’ve never had such a bad experience when having an examination. I am grateful to have had the procedure to rule out problems but I think having re assuring nurses, even if something is going to hurt, makes such a difference. And the embarrassment of lying there uncovered in a room full of unfriendly people wasn’t pleasant! So I really sympathise with your experience. Hope you are feeling ok now.

[Chancery in reply to Gen89]

I had the same, there was about five of them in there, but I was lucky they were at least all women. However the student doctor who did the procedure was incredibly uncommunicative. It would have been good, actually, to hear the supervising doctor tell her to speak up and to reassure me etc, and to warn me as she did each stage. Even an apology when it hurt would have been nice, It would have reassured me they were actually being careful. As it is, I've come out of it traumatised, never wanting another one as long as I live and frankly adding to it to my reasons not to trust doctors. I could certainly have done without it. What baffles me is they are right there, allegedly teaching young doctors, but why aren't they teaching them to communicate with the patient, to be gentle, to apologise if they hurt someone? It seems as if all they teach them is technicalities and the patient doesn't matter. But kindness makes all the difference in the world.

[Gen89 in reply to Chancery]

absolutely agree.

[Shoeysmum]

The last time I had a cystoscopy the consultant discovered that there was a problem with my urethra as it was closing up (sorry, I can't remember the medical term) and told me that it would be too painful for me if he was to proceed. I had to go in as an outpatient to have it stretched under general anaesthetic. I'd been having UTIs for about 6 months and this procedure solved the problem.

I wonder if you have/had the same problem with your urethra which is why it was so painful.

[Chancery in reply to Shoeysmum]

I have wondered about that in the past as I realised that I obviously have atrophy there. The doctor has prescribed oestrogen cream, so I'll see if that makes a difference. If not, then I might suggest narrowing of the urethra, but I do have to hope that one of the doctors might have noticed that, just in viewing the general area. I had told her beforehand that the skin of my vulva was permanently sore (it's been like that since 2018, if you can believe that, with no help from my GP, who never once thought to suggest hormone treatment, despite my age). I would think that I might have bled afterwards if it had gone in too narrow, as it were, but that's the one thing I have been lucky with, no bleeding, and not much irritation either. I'm thinking, now, that possibly the whole of the area is irritated and sore from atrophy and I should have been prescribed hormone cream way back, and I could have avoided this d*mn cystoscopy! I feel very cross at the doctor who told me, in 2020, that she couldn't do anything more for me than give me hydrocortisone cream - that was it. I'd like to punch her, frankly, but she died recently, so.....

Anyway, fingers crossed the cream works its magic. If it doesn't, I might ask to try HRT before I do anything else, and then at least I know it's not that.

[dinahdough]

I've had two cystoscopies, both times under general anaesthetic. I assumed that was normal. But after hearing your experience and reading other replies I now realise I was lucky. Not that having a general anaesthetic is a good thing but at least I wasn't in any pain. I cannot imagine how you must have felt. You have my greatest sympathy.

[Chancery in reply to dinahdough]

Yes, I feel strongly that if I have to undergo it again I am refusing to be awake during it. As I've said elsewhere, I hate bandying the term traumatic about but as I have literally not been able to stop thinking about it since, it was definitely traumatic. Who needs that s**t?

[Feliciaus]

Sorry you had an awful experience. I am going to have one soon, first time. And now, that I am reading your testimony and other similar posts, I will refuse to go ahead with it, without local or general anesthesia. Don't understand why is it that the doctors enjoy traumatizing the patients.

[Chancery in reply to Feliciaus]

Yep, there is definitely a sad disregard for patients. I have a horrible suspicion that medical degrees don't actually have classes on how to treat a patient.

[Feliciaus in reply to Chancery]

You are spot on! I did not have the cystoscopy as of yet. Someone is trying to help me get an appointment next week. And will not do it without a local or general anesthesia, that's for sure. Thank you for your reply and wishing you the very best!

[Chancery in reply to Feliciaus]

The very best of luck with the procedure. Let me know if you get anaesthesia and how you find it. X

[McHargF1]

Totally agree. I had a cystoscopy a few months ago and was told that I would just have discomfort. It was certainly not discomfort. It was pain. A horrible experience.At least you can prepare yourself if you are told the truth and not made to feel an idiot for reacting to the pain.

[Chancery in reply to McHargF1]

Yeah, I've had time now to get over it, but I've been left with the lasting impression that I wouldn't undergo one with a student doing it again, and I'd be very doubtful of having one without anaesthesia again. It's also left me not wanting to pursue any more help with bladder problems because I wouldn't want any more painful or embarrassing procedures like that one. That's not helpful for healing!