Anyone had repeat cystoscopy /urethral dilation?

[stirling]

Hello,

Really hope someone can help/share experience. Two years ago I had a cystoscopy with a urethral dilation which was excruciatingly painful for several months after, mostly because I had an e coli infection that became Antibiotic resistant.

I was terrified at the time and especially when my GP told me if I didn't take the tenth course of antibiotics I'd go into sepsis.

My diagnosis was intersticial cystitis. The hospital have since wanted me to stay on low dose ab.. But I don't want to.
My symptoms are serious flare ups / post sex which I rarely have - chronic pain feeling like infection, constantly needing a toilet, several trips to the loo in the night.

I've tried so many things diet wise. But I have a Prolapse too, cystocele and a rectocele. Plus menopause symptoms like dryness, heavy bleeding every two weeks.

I'm exhausted and depressed. The urologist wants to re do the urethral stretch because apparently my bladder lining is cracked and it'll only get worse.
He said that my urethra was extremely narrow like a childs.

I'm scared I'll get another e coli infection. I'm resistent to most antibiotics.

I also remember reading that the procedure was "barbaric" and could lead to permanent nerve damage.
I had horrendous pain after my stretch for three months but wasn't sure if this was the e coli... But it felt like my whole pelvis was on fire. I don't know what to do! But leaving it alone is also hard, I'm not emptying my bladder properly.

Any advice?

Thank you

[MegGriffin]

Hello. I'm sorry you are suffering so much. I'm afraid I can't help but wondered why you originally went. I have posted in general health as I'm having frequent urination (I havent had any replies yet) and an ultrasound has shown my bladder does not fully empty so I have been referred to urology. I hope someone comes along with some useful advice soon.

[ksake]

I had one years ago, all I remember is the pain. Screaming in agony every time I tried to pee for six days . GP was out giving me morphine as I had another major same time in the same area . I wouldn’t have another if I can avoid it - would agree they are barbaric.

I’ve had a doctor place a ch18 in my urethra - normally a ch10 - for 5 days to try to rectify stricture too. Bloody horrible pain.

I self catheterise now instead, I find if I stick a 10 or a 12 catheter in every couple of days I get a bit of a stretch again and can pee comfortably. Have a permanent low level infection but can relatively live with that - pain isn’t great but I get there. The good thing is the more you cath the less painful that is though.

[ksake]

Have the suggested Fowler’s syndrome as a diagnosis ? That’s what I was told - that or some sort of disorder of development. I also have pelvic floor dysfunction but they think that’s secondary .

[stirling]

Hi everyone thanks for the replies. Meg I originally went for the same reason as you, slow flow and bladder not emptying. By the time I got a referral I already had a sex induced e coli infection. Ksake, that sounds horrendous! Yes heard of fowlers syndrome, no one has suggested it and Lord knows I've seen plenty of urologists, some privately, total waste of money...

[ValleyoftheHorses]

You probably have a chronic embedded UTI. Seek an opinion from a specialist

www.chronicutiinfo.com/intro-key-info/treatment-uk-specialists/

Hope you feel better soon

[MegGriffin]

Thank you for replying Stirling, I really appreciate it.

[stirling]

You're welcome Meg, and thanks for the link Valley, will check it out...

[Goldilocks10]

I have had a urethral dilation 2 years ago, after retention and a weak stream. I started to get similar symptoms late 2019 and was referred back to the the same urologist who suggested the same procedure, but with twice weekly self catheterisation after.
I have since had a second opinion fromanother urologist -same opinion, and a opinion from a uro gynaecologist who has prescribed vagifem - as I'm menopausal. And told me not to go ahead with the surgery. phew!
The stretch is a temporary measure which is quite controversial as it only has a long term success of about 10%. So avoid it is you can.
The uro gynae was not over concerned with retention up to 200ml .