Issues with Urologist and treatment

[Archives1]

Hi all

I am concerned regarding my Urologist who is a professor at my local hospital hence no one is higher than him.

2nd appointment (which was a teleconference with my support worker and carer at the time) He first stated there wasn't any solution then he wanted me to self Indwell Catherise (he stated this on the phone with my support worker or get support worker to do it) without any training or knowing exact size.

3rd Appointment (Dec) He stated he doesn't want me to be Indwelled catherised due to uti risks and have Botox to the Urethal Spinctor and prostate (but wrote to GP COPY AND PASTED "Botox injections to the pelvic floor and bladder neck given that he does have longstanding voiding dysfunction".) I signed relevant paperwork that day and was told have the procedure in February.

4th Appointment (28th Feb)Urologist never showed up nor communicated this with his staff as he was flying to London (I am in Sydney, Australia) and was not notified this until 30mins after the appointment and had to wait an additional hour for a different urologist who made me sign the same paperwork as didn't know if it was sent to Admissions back in December (thankfully as after the appointment
I went to hospital admissions and found out my urologist never submitted the paperwork in December and refused to allow me to make a written complaint due to all the issues with the urologist.

I forgot to mention he flat out refuses to communicate with my Continence Nurse (who is private and the urologist is public public system refused my a public Continence nurse) my continence Nurse is a Doctorate with a PHD and I requested him to do this numerous times.

My question is

Is Botox to the Urethal Spinctor and prostate and "Botox injections to the pelvic floor and bladder neck given that he does have longstanding voiding dysfunction the same? If so what are peoples experiences as I have a letter from admissions that I should have the procedure in about 3 months? And would people trust this behavior from their specialists? Many thanks

 

[Archives1]

As you are uncomfortable with the service you have received I would suggest that you return to your GP and ask them to explain the procedure. Many specialists in Australia also lecture at nearby universities, so being a professor does not guarantee success. Despite this, I am very comfortable with my Associate Professor urologist in Wollongong.

Being uncomfortable, I would also suggest that, if possible, you seek another opinion. Your GP should be able to advise alternatives.

 

[Archives1]

I’ve been receiving bladder Botox injections for the past seven years, now every quarter for the past four years. It’s not a big deal and it’s completely worth it. I regained 90% of my regular bladder function during the day and 50-60% of my regular bladder function during the night. Most people are too scared to try it, but I can’t recommend it enough. The few people here who have tried it have been grateful I suggested it and they love it. I don’t see any reason why you need to wait around for three months to get the injections done; that should be able to be done immediately. In America, for the most part, we get what we want when we want from our doctors so it’s so hard to understand how slow things go in countries with socialized medicine. Neither system is perfect, to be sure!

If you use the “search” function (the magnifying glass) and type in Botox, you’ll find many previous posts about this. Recently, somebody asked me to write up a detailed description of the procedure and I did. You should search for that and then you’ll know what to expect.

Good luck; sorry to hear you’ve got a crappy Urologist. I would try to get another one if I were you but first I’d get the Botox going.

 

[Archives1]

How likely with this procedure I will be more reliant on Diapers?

It is not that I like diapers (I have been accused of being a DL but I am not wished I had a normal bladder but will never have one) but they are comfortable especially plastic backed rather than the rubbing I get with normal underwear or cloth-backed disposable and I wouldn't be able to self Cath (essential tremors in hands as well as Autism and lack of range of movement due to spinal issues to the point I should be more reliant on my wheelchair.

Plus since 2009 I have worn protection due to this issue and have been I guess used to the extra padding and security over time

 

[Archives1]

With Botox, I no longer need diapers in the daytime and I need one to give while sleeping.

My diagnosis is Neurogenic Bladder. My symptoms include bladder cramps, leaking, overactive bladder, polyuria, nocturia - the whole shebang. All symptoms improve with Botox.

 

[Archives1]

I found these trusty websites for you. This pretty much sums up the entire quick procedure.

Botox for Overactive Bladder – Pelvic Health

Botox injection into the bladder is a well-established treatment for overactive bladder and urgency incontinence. Learn more or request an appointment today.

www.uclahealth.org

https://www.mkuh.nhs.uk/patient-information-leaflet/botox-injections-for-the-treatment-of-an-overactive-bladder-2#:~:text=Botox%20is%20most%20often%20injected,into%20areas%20around%20your%20bladder.

 

[Archives1]

My urologist states

S***** came back for a review in the Urology Clinic today. He remains bothered by overactive bladder
symptoms in particular nocturia despite alpha blocker therapy with tamsulosin. He wished to consider a trial
of urethral catheter for managing his symptoms but I cautioned him against this given the risk of introducing
infection into the lower urinary tract. S**** had already tried some fluid restriction at the nighttime and as
you know he does have a large capacity bladder with a variable degree of emptying although during
his urodynamic studies back in June his bladder emptied completely.
I have reassured S***** that his upper urinary tracts are not at risk and the challenge is to improve his quality
of life from the urological point of view. I think it would be worthwhile proceeding to some Botox injections to
the pelvic floor and bladder neck given that he does have longstanding voiding dysfunction.
S***** was quite well informed and we discussed the difference between intravesical Botox which would
impair his bladder emptying versus treating his outlet with botulinum toxin therapy


Yet he states to me I have an underactive bladder in front of my Support worker and Carer

 

[Archives1]

Hello Snow,

I think you're talking past each other. There are different Botox treatments. The one SJ is referring to is sometimes used for detrusor sphincter disynergy and can be an alternative to a sphincterotomy.
The aim is not to restore continence but to reduce harmful bladder pressure at the cost of poorer continence. This procedure has a very narrow indication and is usually only carried out in men, as the use of a urinary condom is more advantageous here than in women.
According to what SJ writes, I see no indication for this procedure here as the UD has obviously not shown any dangerous bladder pressure and he can void residual urine free.

As far as communication "between the trades" is concerned, I can only say for Germany that something like this is at least required in the clinical area and is actually desirable in home care - it only happens too rarely. Especially when it comes to self-catheterization, this is also important, as very few nursing staff here in Germany normally provide this instruction (or support from the manufacturer).

However, since SJ's doctor writes that there is no residual urine, I honestly don't understand why he should catheterize. If there is an overactive bladder, you can of course dampen it with Botox as you write - but that wasn't SJ's question...

cu Michael

 

[Archives1]

SJPersonal -

I have spent years dealing with dyssynergia and both bladder, bladder neck and sphincter were resistant to treatment and meds. I had multiple sphincterotomies and bladder neck incisions and now just leak out. This was salvage type procedure after all of the others failed.

Botox works well for most and did for me, I was one of the few that had a reaction/became resistant to it. To Snow's point, its pretty easy and does reduce bladder spasm which is what it sounds like you might need. From your Urodynamics above, it says you have a large bladder and can empty, this is good! Bladder would look different if it was truly fighting against sphincter (bladder wall can thicken)

I would pursue Botox for as long as possible. I only had sphincterotomy and surgery due to scarring, and other issues leading to retention, infections, high pressure and ultimately a few very nasty kidney infections. I still have some retention and infections today

Due to nerve issues I have general pelvic floor issues, lots of spasm and tightness. I have learned that this also creates many (most) bladder issues and discomfort. I would tell anyone here to look into treating the whole pelvic floor and not just the bladder. They have therapists and treatments to go along with any bladder program I highly recommend (your continence nurse should be aware of and on top of this if you have not tried already)

I hope you find some comfort and peace.

 

[Archives1]

@SJPERSONAL, do you have the option of a different urologist? If so, I suggest you do so. Since 2017 I have seen 6 different urologists. Indeed the sixth one has been things that have helped me. You are the customer/patient and deserve better than you are getting. It might be worth it to get someone else's input.