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Just had Urethral Sphinter and Bladder neck Botox and other treatment options I am going to discuss with Urologist

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Hi all

Just had Bladder neck and Urethral Spincter Botox on Monday stayed overnight in hospital with an indwelling cath and leg bag but when being discharged I was having straining issues, as well as burning and was told by the recovery ward to go to treating GP the urology dept reception told me the same thing as I left with no IDC or AntiBiotics.

Wednesday went to treating GP which told me to go to local ED (So I went to local hospital not the one that did OP) well they inserted IDC as well as a flip flow and gave me an antibiotic and referral letter to go straight to treating urology Dept the next day.

Thursday Went to the Urology Dept well the receptionist was just going to let the nurse talk to me and make a follow up appointment with no action that day. Thankfully the nurse rang my treating urologist and wanted the flip flow replaced with a leg bag and will be called this coming Tuesday or Wednesday to see how things are going but I don't see the Urologist til the 22 May.

Apparently I might get the IDC taken out on the 8th but I am going to request to keep it in until I see the urologist as I am going to discuss other treatment options as Botox if works only works for about 6ish months and then will have to take it easy no exercise or stuff for 6 weeks after everytime botox is done.

Well I feel I am completely tolerating the complete urinary incontinence quite well (caused by IDC) except its bulky, doesn't fit under clothes well as well as I am slowly becoming more and more wheelchair dependent and have multiple falls which I am concerned will dislodge the IDC in future if I chose the as the perminate option as well as no sexual activity, exercise etc

Today has been emotional hell as been over analyzing my future with my bladder to the point I ended up contacting both my Psychologist and Psychiatrist to make sure I am not made about wanting to be made completely Urinary incontinent without any external devices. As had Bladder neck and Urethral Sphincter Botox done

Blader treatment options pros and cons

1. Botox to Urethral sphincter and bladder neck might not work.
- Every 6ish months
- Reduced workload 6 weeks afterward every time post-OP
- Reduces efficiency over time.

2. Indwelling Catheter (cant Intemedite self cath due to essential tremors etc)
- Falls risk I should be using a wheelchair a lot more often due to my spine and feet but it is not OH&S-friendly for support workers who require mobility scooters.
- Will take time to adjust to wheelchair/ mobility scooter as will be more reliant over time due to spine and feet according to Neurosurgeon, Podiatrist, EP, Physio
- Multiple falls to the bathroom.
- Bulky does not fit under clothes well
- Fear of dislodgement if fall
- Has to be changed approximately every 3 months government is already paying for briefs and it is unlikely for nursing to change IDC.
- Possible won't be able to masturbate/sexual encounters or exercise much except swimming with a flip flow.
*POSITIVE- Am completely urinary incontinent for short periods no Frequency, controlled leakage, no retention NO NUMERMOUS FALLS TO BATHROOM AT NIGHT.

3. If able to make the Bladder itself incontinent (My wish)
- Once off
- Already have briefs that are more discrete than IDC.
- Already previously advised by OTs, StateHealth clinical staff to use Briefs in bed due to fall risk. (Bladder is uncooperative regarding this as well as urinal bottle etc.
- Possibly fewer infections than IDC and cath,
- Briefs help with bowel marks (which I think is blood about to have a gastroscopy and colonoscopy done (the Gastrologist thinks I have IBS Constipation after initial appointment) as well as excessive sweating.

Are there any pros or cons I am missing

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I've been where you are, and also had severe urge incontinence with a neurological dyssynergia sphincter (blockage). I too had botox done, twice. And each time it only made my problems worse. Which I also ended up with an indwelling catheter (IDC) for about 3 months when it wore off (not 6 months).

I also had an Interstim implant, but that made things even worse. And forget all the useless meds I tried- and their bad side effects.

The only time I was without pain or peeing problems was when I was cathed. As for comfort with them. Get a leg bag, AND with a sock/sack holder. Those straps don't work good, but the sock does. My urologist at the Mayo clinic eventually confirmed I'd be ok with the cath draining into a diaper. BIG caveat there though. You can't be prone to UTIs, have to drink cranberry or take cranberry pills every day, and must stay extremely well hydrated. So long as it's constantly flushing itself out, UTI risk stays pretty low. I'd also add, if you can get one, put a 1-way valve on the cath too.

I did end up getting the surgery to become functionally incontinent. Which for me meant FIFTEEN sphincterotomy type surgeries. AND having my prostrate removed (due to developing a bad stricture blockage). I can confirm that being functionally incontinent (and stable) is MUCH better than living with constant painful urges and straining to pee.

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