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Original poster

Scared - blood in urine

66 replies

Florabella · 19/09/2016 15:22

Feeling very scared. I have had blood in urine on and off for 2 weeks. Went to gp and he gave me antibiotics for uti, but it came back and next doctor didn't think it was infection as no other symptoms. She has given me an urgent referral to test for bladder cancer and I am now sitting fearing the worst. Can anyone give me any positive stories about blood in urine with no other symptoms?

OP posts:
Tanfastic · 07/10/2016 23:54

How you doing Flora? You had your appointment through yet?

Original poster
Florabella · 11/10/2016 14:47

Hi, sorry I've only just seen this. Appointment is on 27th for cystoscopy and still trying to chase ct scan. I've put it to the back of my mind just now, but am really having to chase appointments otherwise I've found you still get lost in the system. Later than I was told, but at least it's happening. any movement with your yet Tanfastic?

OP posts:
Daisyandbabies · 11/10/2016 17:02

I had this. It was a kidney stone, no massive deal

Tanfastic · 11/10/2016 17:26

Hi Flora, glad to hear you've got a date, are you still having any problems?

I've not heard anything at all, I assume mine is bottom of the pile Confused. Like you I've put it to the back of my mind.

Went to the docs about something different last week and saw a different doctor who asked me why I was seeing an urologist Hmm. I said well because of the blood in my urine and he then went on to tell me there was none on the lab tests, only on the dipsticks (which he said is very common). Now this is completely at odds with what the other GP said which led to me having a panic and seeing the urologist. So now I don't know what to believe. I haven't got access to the results to check who is telling the truth. The GP then brushed it off and said "well go along and see what they say" and then he changed the subject. No idea what to think now Angry.

Original poster
Florabella · 12/10/2016 07:20

I do think gps are very hit and miss. The urologists are the specialist and yours did think it was unlikely to be serious. I had three deprecate instances of visible blood, each lasting 3-4 days, but nothing visible for nearly two weeks

OP posts:
WordYaGoBernadette · 15/10/2016 08:39

Flora - your health care trust seem to be playing fast and loose with the 'two week wait' system. They seem to think that getting you an appointment with a urologist within 2 week suffices. Whereas in my area visible blood in urine in a patient over 40 (that would be me!) entitles you to a cystoscopy and kidney scan within two weeks.

It shouldn't be you doing the chasing; your GPs office should be doing that.

However, the urologist has assessed you as very low risk so that must be reassuring for you.

Best of luck

Tanfastic · 15/10/2016 15:19

Waves at Wordyago Wink

I was thinking the same actually with the two week thing. I assumed that included the time for the actual tests. In your shoes Flora, I'm not sure I'd be happy waiting that long. My DH recently got referred under the two week rule and he had a colonoscopy within the two weeks.

I'm still waiting for an appointment for my Cystoscopy four weeks on from seeing urologist. Not sure what the timeframe is for non- urgent. Really hope it's this side of Christmas Confused.

Flora, please do come back and update us how you get on Flowers

nmg85 · 17/10/2016 10:03

My first cystoscopy after referral was within 6 weeks after having other tests in-between such as ultrasound, flow tests etc.

Tanfastic · 17/10/2016 11:01

Mine is going to three months from seeing the urologist. I've just telephoned to chase and they've said end Nov early December Shock. I
Assume I'm in the very non urgent list in that case.

nmg85 · 17/10/2016 11:12

I think 3 months is usual, I was lucky at the time but was told it could be 3 months.

Tanfastic · 17/10/2016 11:22

Aah right, thanks. I'm not worried about it now, I'd be more anxious if I was still having symptoms but I feel perfectly fine down below. I just want it out the way IYKWIM.

Tanfastic · 18/10/2016 22:09

Hi Flora, looks like my Cystoscopy is the day before yours the 26th Confused. Got a phone call today. Feel a bit nervous again now. How are you feeling?

Original poster
Florabella · 22/10/2016 07:27

Hi Tanfastic, that's great that you have an appointment earlier then you thought. I'm really not looking forward to mine - pretty sure I will freak out about it on the day. Please let me know what to expect.

I've had my Ct scan as they had a cancellation so will chase up the results of that, but I'm assuming that no news is good news.

The 2 week wait thing is strange. When I chased the appointments I was told that the urologist had put me as urgent, but that gets the cystoscopy and scan within 6 weeks (not sure what the extra urgent path is called!). I wouldn't trust the gps to do the chasing for me - would rather speak to people myself so I know it's done!

Good luck on Wednesday Tanfastic!

OP posts:
Skala123 · 22/10/2016 07:45

OP do you exercise strenuously? I have had visible blood in my urine several times over the last few years and have had all the tests inc cameras etc and they found nothing so have put it down to strenuous exercise. Just wondered if this may also be relevant to you?

Original poster
Florabella · 22/10/2016 10:23

I'm definitely not a strenuous exerciser 😀. Apparently there are lots of cases that are never found to have a cause. Haven't had the blood for a while so hoping that's a good sign.

OP posts:
Tanfastic · 22/10/2016 16:43

Hi Flora, glad you've had the scan at least. You would have been told pretty much straight away I would have thought if they'd been anything amiss with it of any significance anyway.

Can't say I'm forward to Wednesday. There's lots of things I'd rather be doing than lying on my back with some stranger between my legs with a telescope Confused. Oh gawd ConfusedConfusedConfused.

I will let you know what to expect.

Original poster
Florabella · 26/10/2016 07:01

Good luck for today Tanfastic. They told me that I could ask for a local anaesthetic if I needed one, but it's not automatically given.

OP posts:
Tanfastic · 26/10/2016 09:10

Thank you! I'm feeling a bit nervous but not off the scale Confused.

On my letter it says they use numbing gel. I'll take that thanks Grin.

Will report back later with a blow by blow.....

Tanfastic · 26/10/2016 18:56

Update on me.....

Well all is well Grin

Had the Cystoscopy this afternoon and it was fine, it really wasn't anything to be worried about. The worst bit was the waiting, my bloody legs were trembling!

They nearly didn't do it because apparently I had a temperature (but it was bloody hot in there) so they did a urine test to check for infection. No infection but just blood again so given that I felt well the consultant was happy to go ahead.

Just so you know what to expect Flora, they prep you first, get you gowned up with just your bra underneath and slippers if you have them. They took my temperature and blood pressure and I filled in a form. Then the consultant who was doing the procedure came to chat with me, explained what he was going to do and got me to sign a consent form.

Then I was called into a room with two nurses and the consultant and asked to lie on the bed with knees bent in the position you adopt for a smear. He put a sheet with a hole in it over me. He then wiped my bits with antiseptic wipe and inserted the camera. I was told there was anaesthetic gel on the probe but was told afterwards it was really just lubricant and isn't that effective. That was the worst bit, it did smart a little bit until it was in your bladder. Then he just waved the camera around in a circular motion in my bladder. The screen was at the end of the bed so there was no avoiding it! He showed me all my bits on screen and said it was all perfectly normal, nothing there to worry about. He said in most cases this happens. He only finds something in 1 out of 20 or so patients.

He has ordered an urgent scan because this was forgotten apparently so I get that in the next couple of weeks.

Good luck for tomorrow Flora, honestly the procedure is no worse than a smear test and I'm the biggest baby going! Do let us know how you get on.

Original poster
Florabella · 26/10/2016 19:23

Thanks Tanfastic. Really glad that you were all clear and that it wasn't too bad for you. I have to admit, smear tests freak me out anyway - I really can't cope with medical people in that area (even though I have given birth 3 times!), so I think I might ask for a local.

Have you had any after effects? Anything sore? And does it hurt to wee?

Really appreciate knowing what to expect
X

OP posts:
Tanfastic · 26/10/2016 19:49

It hurts a little bit to wee, just makes me wince a bit but nothing I've not experienced with a UTI. Nothing else, I feel fine.

I bet I wasn't on the bed more than five minutes. The local anaesthetic was supposed to be a numbing gel but I didn't notice to be honest. They didn't apply it to me, just wacked a bit on the end of the probe so it wouldn't have had time to take effect anyway. There was a slight stinging whilst it went up my wee pipe which lasted seconds. Then it was ok once it was in my bladder. I couldn't feel a thing. Honestly you need not worry at all about the procedure Flora, it was all very dignified and I felt quite covered up. The doctor wasn't peering between my legs or anything BlushGrin, in fact he hardly looked down there!

The staff were amazing.

Tanfastic · 26/10/2016 19:50

Ooh, just while I think of it, what does the scan involve? Is it an ultrasound or a ct scan with dye?

Maquiladora · 26/10/2016 20:14

I actually found the cystoscopy less invasive than a smear.

Tanfastic · 26/10/2016 20:21

Yes I know what you mean, you don't have someone peering between your legs!

Original poster
Florabella · 26/10/2016 20:34

Thanks, that's reassuring. I had ct scan with dye. The dye feels slightly strange and warm as it goes though, but it's all pretty quick and easy.

It's good that they were able to tell you there and then that there wasn't a problem.

I don't mind the indignity of people looking - it just feels so invasive to me. Hope it will be better than expected

OP posts: