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Any positive experiences? Cystoscopy and urethral dilation

(32 Posts)
stirling Fri 21-Apr-17 17:00:38

Hello,

In a huge dilemma here and really would appreciate some advice. I've been waiting for a referral to urology for 3 years - (nightmare back and forth and arguing with doctors) for what started as slow flow of urine and very frequent trips to the loo including several times at night. There were also burning /awareness of bladder, not quite the full stinging you get with UTI and no bacteria ever found. (12 years ago I suffered with recurring bouts of cystitis)

The strange thing is that at times, over the last 3 years, symptoms would dissappear for a bit.

Over the weekend I ended up at UCH hospital because my bladder was barely emptying - just a drop, and I was in pain. They told me I'd be referred for MRI and urodynamics testing but could take a couple of months.

Meanwhile my appointment for urology finally came through at local hospital - he said we need to book you in straight away for cystoscopy and urethral dilation. Under GA. (not happy about that) and gave me a surgery date for 3 weeks time. I barely had a chance to ask a question.
I'm not sure whether to wait (a long time?) for UCH's less invasive approach of investigating first... Or just be grateful something is finally happening and bite the bullet + have the procedure at the local hospital.Also need to get off the system of 2 hospitals and decide.

Trouble is I read so many scare stories of cystoscopys and urethral dilations gone wrong on the bladder health forums last night....feel very uncertain.

Any advice appreciated. Thanks

OP’s posts: |
HarryBlackberry Fri 21-Apr-17 18:30:03

I've had it done three times. Just take some big bottles of water and drink as much as you can after you wake up. Totally waterlog yourself. It'll help you wee pain free afterwards x

ImCatbug Fri 21-Apr-17 19:14:16

I've had it twice and it's helped so much with my recurrent UTIs and bladder issues.
It's very straightforward, I felt some stinging (like a really bad UTI) for the first couple of days after the surgery whenever I peed and then all was fine.
I have a history of having complications with other surgeries but my cystocopies have been as straightforward and easy as anything, I would absolutely have it again if I had to.

stirling Fri 21-Apr-17 21:18:19

Many thanks - that's reassuring. Did either of you have the urethral dilation too?

OP’s posts: |
HarryBlackberry Fri 21-Apr-17 22:47:31

Yes I've had urethral dilation. It was fine. Don't know if you've heard of it, but I take D Mannose. After nearly 30 years of bladder problems it has really helped me. I'm not on commission! Just want to help you. It's great stuff.

shouldnthavesaid1 Sat 22-Apr-17 00:50:47

I had one a few years ago , on an urgent urology list for another plus urodynamics etc. I was 19 at the time and petrified but it was fine, I had a spinal block and heavy sedation. Sore after and quite a bit of bleeding but it settled within 3 or 4 days and painkillers from the GP. It did work at first (I have a stricture). Unfortunately 6 years later it's back hence 're referal . But did help at the time, no incontinence or anything just pain for that 3 days.

Teabagtits Sat 22-Apr-17 01:08:40

I had it as a teen and went from permanent Utis & cystitis to maybe once a year. Warning though, the first pee afterwards is like pissing glass. I fainted with the pain. It was really worth it.

Brysonette Sat 22-Apr-17 03:01:45

I've had two. First one when I was 15 years ago which solved the problem of chronic urethral pain and the second a couple of years ago when the pain returned. All fine now. Agree with the first few wees being v painful but it was worth it!

stirling Sat 22-Apr-17 17:18:20

Many thanks for your replies everyone... Its comforting especially when I read so many horror stories on the bladder health website.

Bizarrely, I feel fine today and yesterday - no bladder / urinary problems whatsoever.
This makes me wonder whether I really need it, because if it were an obstruction surely it wouldn't come and go.?

OP’s posts: |
HarryBlackberry Sat 22-Apr-17 19:17:11

Just bite the bullet and get it done. Honestly it's fine. So long as you down as much water as possible afterwards, and take a few days off work you'll be fine. I'm a complete scaredy cat and if I can do it so can you! flowers

stirling Sat 22-Apr-17 19:25:59

Ah, thanks Harryblackberry - and yes I have used D manose with much success in the past, recently it hasn't worked for some reason....

OP’s posts: |
Brysonette Sun 23-Apr-17 12:40:34

I was the same, the pain would come and go. I did find I wee'd like a horse for a couple of weeks afterwards (the consultant said he was 'generous' with the dilation shock) but normal now!

PollyPerky Sun 23-Apr-17 14:09:51

I was offered this years ago and refused. I read many posts on it and some women had horrendous experiences.
I got 'relief' by using an antihistamine for bladder inflammation, changing my diet hugely, drinking mainly only water, and using local oestrogen (peri and post meno.)
I know some women find the op helpful and you may want to go ahead - clearly it works for some. I think it very much depends on what the problem is. IMO some drs offer this as they don't know what else to offer and think they have to do something.

shouldnthavesaid1 Sun 23-Apr-17 14:47:48

I would agree with that , they don't seem to know what else to do - 'Oh well we'll stretch your urethra then.' My GP told me last time they weren't even 100% sure there was a narrowing but they did it anyway.

But yes if you do go for it drink lots of water - lots. Pee in the bath and take the cystitis sachet things or bicarbonate to calm it.

I was told obstruction can get worse with opiate medication , somehow , I'm on a lot for pelvic pain plus an anti depressant . GP suggested the two together could be making it worse.

I just don't want a catheter again, 4 this year so far, it's awful.

PollyPerky Sun 23-Apr-17 15:13:10

My concern was that if the stretching were to cause scar tissue wouldn't that make any obstruction even worse?

stirling Sun 23-Apr-17 15:55:38

Thanks everyone. I'm actually thinking of asking them to only carry out the dilation if it's necessary, else only cystoscopy. But given that I'll be out of it..who knows what the surgeon might do..
My concern is scarring /permanent damage but I've been told this is a less than 1% chance.

I was also told it was a less than 1% chance of me leaking brain fluid after a nasal op to open my septum. Given that I was knocked out, the young surgeon "knocked it back into place with a mallet" and 4 days later I had a brain haemorrhage.

Needless to say I'm very wary. Also a single mum...

OP’s posts: |
Babyiwantabump Sun 23-Apr-17 16:09:24

I have had urethral dilation twice for recurrent UTI . They were done over 12 years ago and no problems since - toltally worth it. Was done under GA both times and recovery was straight forward . It was either that or self catheterisation which I really didn't fancy doing for the rest of my life!

Mine was caused by childbirth- not emptying my bladder during second stage so causing trauma and a crushed urethra . I would spend hours on the loo drinking water and just trying to pee without that horrible burning peeing glass sensation.

It really helped and have had no problems since .

medicinewoman182 Sun 23-Apr-17 16:25:30

I agree with @HarryBlackberry

I had recurrent UTI's and was floored with them, bazillions of antibiotics. Had a cystoscope and dilation which helped for a while but came back with a vengeance.

Now I SWEAR BY Waterfall D Mannose. Honestly, like a magic potion!

Allyg1185 Sun 23-Apr-17 16:33:21

I have also suffered from reoccurring uti's and cystitis for 16 years. Again urine samples are always clear. Somtimes may only hurt for one pee and then nothing for days. I also had a cystoscope and dilation under GA. Drink plenty water and painkillers afterwards but its nothing to be worried about. Can't say its made any difference to my problems though

StealingYourWiFi Sun 23-Apr-17 16:35:06

I work in a hospital and we do this under local anaesthetic if the patient prefers with a flexible cystoscope. The patients handle it very well and are much happier to forgo the general anaesthetic. Wishing you well!

shouldnthavesaid1 Sun 23-Apr-17 16:36:35

Do they routinely do them under anaesthetic ? My GP seemed to think they might try this one with just local gel , and Google suggests that's normal? Given I can feel every stage of a catheterisation the thought of a dilation whilst wide awake is making me cross my legs!

shouldnthavesaid1 Sun 23-Apr-17 16:42:13

Oh Stealing I crossposted.. I think I'll talk to my GP on Monday, I would really prefer to be at the very least floored with midazolam.

stirling Sun 23-Apr-17 16:47:55

Thanks Babyiwant, that's exactly what's happened to me. I didn't /couldn't wee during childbirth and damaged my urethra. Been told I have a urethral prolapse as a "cystocele" is visible at the tip of the urethra. Which is a bulge. Also caused by mild prolapse of uterus too....

OP’s posts: |
stirling Sun 23-Apr-17 16:51:13

Stealingyourwifi that's interesting... What, both cystoscopy and urethral dilation under local?

OP’s posts: |
StealingYourWiFi Mon 24-Apr-17 19:21:04

Yes both done under local anaesthetic gel (Instillagel) it works remarkably, the patients are always glad they had it done that way as it's classed as a walk-in-walk-out procedure and doesn't require a stay. You could literally have it done in your lunch break!

If anything we do them more under local than general. The only time we do a general if it's a rigid cystoscopy rather than a flexible.

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