How was your cystoscopy experience and what were the results?

[NearlyMonday]

If you don’t mind me asking. I have been referred, and for some reason I am not panicking (yet), I have had recurrent UTIs (but infection never shows up in my water tests) but I have non visible blood in my water. Plus some period-type pain in my lower back. I half wonder if it’s a gynae issue but they’ve got to start somewhere

I've had 2. One for visible blood in urine, one for non visible (a few years apart).

Both were quick and painless and nothing found.

How old are you, OP?

I’m 56. Did you get your results on the day, or did you have to wait?

Mine was for non visible blood, a little uncomfortable but only lasted seconds. Everything was fine, was told there and then and consultant urologist said that some people get this and they have no idea why. I hope that your results show the same.

I’ve had two as well. They were very quick, maybe slightly uncomfortable but certainly not painful. Results at the time.

Normally this sort of thing would put me on the ceiling, but I’ve read that very few women who have cystoscopies are found to have cancer, and of those who have it, its usually “in situ” and very treatable. Please don’t think I am making light of this, but I am trying to be rational

Hopefully this reassures rather than panics you but in my mum's case it was cancer. However going for the scope early after symptoms started meant that it was caught in time, fully treatable with a relatively minor procedure and she's still here almost 20 years on.

That’s good to hear, what age was your mum when she was diagnosed?

I’ve had one for very similar symptoms, it was found that my bladder wall was damaged from a long term infection but the bugs were “hiding” under something called biofilm. I got put on antibiotics and it changed my life, I’m thankful for the doctor who did it every day

I had similar symptoms to yours OP, for about 3 years on an off, including a couple of occasions with visible small clots of blood in my urine. I was fobbed off repeatedly, despite asking for proper investigation and pointing out that my aunt died of bladder cancer.GP - a woman - said it was sure to be pain and bleeding from my vagina (I was post menopausal). Eventually there was a lot of blood and it was cancer- stage 2 - had to have my bladder removed. When I had my op the lady in the next bed had experienced the same blasé attitude from her gp, but sadly the cancer had progressed much further.

I'm surprised to hear you were fobbed off. Visible haematuria in women over 50 (I think it may be younger) is always an automatic two week referral for cystoscopy. Same for non visible haematuria if there is no sign of infection.

Any postmenopausal bleeding has to be referred unless the GP can see a cause on examination- even then, it's good practice to refer.

OP - i think 3% of referrals for non visible haematuria detect cancer and it is almost always men.

OP - i think 3% of referrals for non visible haematuria detect cancer and it is almost always men.

Yes, this is what I seem to be reading. It sounds to be more prevalent in elderly male smokers. My late mother had kidney cancer but she was a very heavy smoker, I have never smoked.

My first sample with blood was noted in July (but then other samples were clear) and it’s only in the last few weeks that blood has reappeared, hence the referral, so I am hoping that would be “catching it early”

58 I think

Just to had that I had a CT scan in September (kidney, urethra, bladder) to check for kidney stones, hoping that anything significant would have shown up on that? No kidney stones were found

I’m going to be honest because I wish I’d been able to prepare myself. Personally I found it incredibly painful. The whole thing only lasted about 1 minute but it was so painful that I cried (I’m not a cryer). It was very painful to urinate for about 1 week after, like I was passing glass and I did get a uti from it.

I don’t want to fear monger but when researching the experience before having my appointment people were saying it was painless and just uncomfortable which didn’t allow me to prepare myself for what was going to happen, I’d wish I’d been able to mentally prepare myself.

The second time I’d had it (within the same month) it was half as painful and I genuinely think that’s just because it wasn’t such a shock. I took a paracetamol 2 hours before the appointment and an ibuprofen just after and continued that pattern for a few days until it stopped hurting to urinate

Thank you for the tip about taking paracetamol before hand and I appreciate your honesty.

Hopefully nothing sinister was found?

Sorry I didn’t even say, they found something called pseudomembranous trigonitis, apparently 40% of adult women have it

I assume that’s not a cancerous condition?

I'm 52 and have had four of these done (under general) as i have had non-visible blood since my early 20s. I still do. No reason has ever been found, I still have it, as I test my urine at home every now and again. I guess it's just one of those things. Vagifem pessaries have helped with bladder pain - i went through a very early menopause and must be very lacking in oestrogen down there. Apparently the bladder needs oestrogen.
My advice to you would be to drink lots and lots of water afterwards, to flush the scratchiness away.
Also, as someone else said, be prepared for a bit of discomfort and then it won't be a shock to you. Good luck.

OP, have you had it yet?

No - my GP can't refer me to Urology until I have some blood tests (FBC and a few other things) and I couldn't have that done til Tuesday of this week. So it will probably be a week til the results are back at the surgery, but by then I will be away on holiday and not back til 12 Feb! The surgery know about this and will make a note on the referral. But I promise I will report back.

I think I'll be referred for one of these OP. I've had small amounts of visible blood in my urine that I noticed a month ago. It happens to me every couple of days. My GP has referred me for a kidney ultrasound and also to urology (she says it's probably going to be months before I have an appointment). My GP didn't bother with a blood test before referring me. Not sure if I should be reassured or not 😂

Trying not to worry, hoping it's a stone or something else innocuous. Bladder cancer is mostly very treatable based on what my late night googling has shown me though.

I had one yesterday, as I’ve had gross haematuria (visible blood and blood clots in urine) but no bacterial infection. Bladder is all clear. I do feel like I’m peeing razors today! They also gave me some antibiotics to take (I guess to prevent infection)
Waiting for the results of the kidneys scan.

I’m glad you got an all clear result. Was the process particularly painful, and did they put anaesthetic gel on your downstairs bits?

Hi

I had one a year or so ago - can't tell you how much I was dreading it, but honestly there was no need at all.
Gel applied on the old undercarriage and then perfectly painless
Good luck.

I had it under general as I’ve also had a very painful swelling on my urethra which meant the access was slightly restricted.
However, I also had one years ago without GA. They applied gel, it was slightly uncomfortable when they went in but fine after that!