Any positive experiences? Cystoscopy and urethral dilation

[stirling]

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

[stirling]

Yes that's right. Hrt took several months.

[Chas23]

Hi, how long do you need to use the hydroxyzine and hrt therapy for? I am assuming these treatments provide temporary relief rather than full recovery, is that right?
Thanks.

[stirling]

Hello , I really regret having it done
Barbaric procedure , cystoscope was forced in. Permanent scarring to my urethra. Ic diagnosis which doesn't really tell you anything.
In the end all I needed was systemic hrt and a fantastic antihistamine called Hydroxyzine to manage flares.

[Chas23]

Hi, what was the diagnosis and treatment, did you fully recover? Thanks.

[ACherryPie]

Hi Tomlolajoe1,
I had a cystoscopy this morning and have been told that I need to return for dilatation under general anaesthetic. They found diverticula and scarring, so are going to need to stretch the neck of the bladder to stop the pressure which causes the diverticula (and my kidney pain). I was wondering if you could let me know how your experience goes on 31st? I can't find the recovery time anywhere either! I need to know how much time I will need off work. I currently have mild pain in my urethra from the cystoscopy and have the feeling that I need to wee all the time... I hope it will feel better by tomorrow!

[Tomlolajoe1]

Hi
I am due to have an operation which is a urethral dilatation and cystoscopy on 31st May. any idea how long I would be off work. Also how long before I can drive. Don't know how to get this info

[Entering]

Had urine retention for years swollen ankles I simply put it down to diabetes and ageing .my diabetic nurse was always on my case regarding healthy eating ,I tried in vain to explain how healthy I ate but she was very dismissive as my blood glucose was always raised .
I was sent to see a gynaecologist for pelvic floor prolapse, he noticed a problem with my urinalysis. I was transferred to a urologist who ordered scans and urodymanic testing . I was soon diagnosed with a stricture plus my urine tested positive for sugar leukocytes and blood. I was soon in the operating theatre having ridged cystoscope.
Scan showed my right kidney was enlarged and contained urine so things happened quickly.
I had a general anesthetic therefore I was unaware of the procedure. I was sore for a couple of days paracetamol taken at every 4hours (do not exceed taking more than 8 in 24 hours ) this kept the edge off any discomfort
My diabetes is now controlled due to me emptying my bladder my weight no longer fluctuates plus no more swollen ankles .
I was anxious about the cystoscope as I read all the horror stories on websites .
Moral of my story is listening to the right consultants and excepting their professional advise and follow all investigations . I was dealt with reassurance and professionally , they also saved me from kidney disease and renal failure.
So glad I went ahead with all the investigations it saved my life

[StealingYourWiFi]

Brilliant! Good for you, hope all goes well.

[stirling]

Sorry for the late reply Stealingyourwifi - it went very well. I mentioned it and he agreed! I'll be having it (the cystoscopy and urethral dilation) under local anaesthetic. With a flexible scope.

He did say that he won't be able to get as good a result - ie stretch as much as if under GA. Something about, if I'm a size 16 (!) I can only go up to an 18...
So I'm slightly tempted to say, oh just go for it under GA, let's get it over in one go...- but think I'll stick to my decision for now. Less likely to be injured. I made the grave mistake of Googling flexi as opposed to rigid cystoscopy - the image of the rigid device was scary.

Thanks again

[StealingYourWiFi]

no worries! How did the appointment go?

[stirling]

Stealingyourwifi, thanks so much. I've managed to push for another quick "2 minute" appointment with the urologist tomorrow morning, I'll be sure to ask about this. Very helpful!

[StealingYourWiFi]

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.

[stirling]

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

[stirling]

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....

[shouldnthavesaid1]

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.

[shouldnthavesaid1]

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!

[StealingYourWiFi]

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!

[Allyg1185]

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

[medicinewoman182]

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!

[Babyiwantabump]

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 .

[stirling]

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...

[PollyPerky]

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

[shouldnthavesaid1]

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]

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.

[Brysonette]

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 ) but normal now!