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Botox !

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User
Posted 29 Sep 2019 at 20:18

Once upon a time I thought the use of  botox was limited to Hollywood grand dames who had gone past their first (or second or third etc) flush of youth, but still thought that an injection would return them to their twenties. Now, I find that the medics are thinking of doing it to me. I thought by way of a change I might get some information before they start the treatment rather than afterwards when I'm  discovering that the "mild" side effects are not quite so mild! If anyone out there has had it and what their thoughts are please reply, I'm not asking for clinical information,  but rather, advice from experience. The idea of deliberately injecting a toxin numerous times  as a treatment seems rather counter intuitive,  but of course, I am just a  patient , so what do I know? Tthanks for reading Regards to all,  gorry p.s. I have a week before I see the man in the white coat.

User
Posted 30 Sep 2019 at 20:28

Hi Chris, thanks a lot for your reply it was a really useful starting point in understanding what is going on. I'm  in the rather difficult position of  having self chathrisied for the last few years because of progressive  Multiple Sclerosis. To be honest, the p.ca was only discovered by accident (as a by product of investigations into  bladder problems caused by the MS). I am not going to have any treatment for the cancer because any little thing that affects me physically or indeed emotionally  (like stress or pain) really kicks off the MS, so all I am looking to do is minimise symptoms and  for as long as possible. I have been told by the medics that Botox might do that, so any insight into other people's experiences will be very helpful in deciding if Botox is for me. At present I am having to self catheterise around 15 plus times a day and it is, of course impacting on sleep, social life etc. A tough call! Anyway, thanks again for your insights. All the best Gorry.

User
Posted 17 Jul 2023 at 08:44
Chris

i have the flip n flow without a bag at the moment. Could try what you suggest to reduce the spasms but to still use my bladder..

cheers

Dave

User
Posted 17 Jul 2023 at 11:41

Dave , just to clarify, I meant, when draining the bladder only partially open the valve, so it flows out slowly. I found even on free drainage emptying the leg bag produced a vacuum in the bladder that sometimes started a spasm. 

Thanks Chris 

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User
Posted 29 Sep 2019 at 22:10

There are a couple of members that have posted about having it - it doesn't work for many men but is probably worth a shot as it is far less intrusive than having a sling fitted. 

I can see from the search that you have already had some discussions with Colwick Chris on this topic but here is the full search result for you https://community.prostatecanceruk.org/search?search=botox&advanced=false

Edited by member 29 Sep 2019 at 22:13  | Reason: to add the hyperlink

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Sep 2019 at 11:03

Gory

I had my second course of Bottox a couple of months ago, not quite as effective as the first dose but still working well. Of course my bladder has a catheter in it and the purpose of the Bottox is to reduce bladder spasms not an attempt to solve incontinence and even with a catheter I still leak about five mls a day.

I belong to a Facebook site that relates to catheters, I was a little shocked yesterday when a member claimed her doctor had "killed my bladder by injecting too much Bottox". There are many on the FB site who have had great success but again it is to reduce the problems caused by having a catheter. 

Hope all goes well.

Thanks Chris

 

User
Posted 30 Sep 2019 at 20:28

Hi Chris, thanks a lot for your reply it was a really useful starting point in understanding what is going on. I'm  in the rather difficult position of  having self chathrisied for the last few years because of progressive  Multiple Sclerosis. To be honest, the p.ca was only discovered by accident (as a by product of investigations into  bladder problems caused by the MS). I am not going to have any treatment for the cancer because any little thing that affects me physically or indeed emotionally  (like stress or pain) really kicks off the MS, so all I am looking to do is minimise symptoms and  for as long as possible. I have been told by the medics that Botox might do that, so any insight into other people's experiences will be very helpful in deciding if Botox is for me. At present I am having to self catheterise around 15 plus times a day and it is, of course impacting on sleep, social life etc. A tough call! Anyway, thanks again for your insights. All the best Gorry.

User
Posted 01 Oct 2019 at 22:27

Hi Lyneyre, many thanks for your response and the link which has proved useful. You say it "does not work for many men" are you speaking as a clinician and that  there is clinical evidence that it does not work for many men, or is that more reflection of responses to this chat line? If there is academic  research on its  effectiveness  that you are aware of perhaps you would let me have a link as it may help me in my decision  making when I see the medic next week? Once again thanks for your interest and support. Gorry

User
Posted 02 Oct 2019 at 07:42
Gorry, Lyn is probably the most knowledgeable person on this site when it comes to prostate cancer. If she tells you something, you can rest assured that it's true!

Best wishes,

Chris

User
Posted 02 Oct 2019 at 14:22

Gosh no! Sorry if I gave the impression of being a medical professional - my comment was based simply on the members here that have had botox and then ended up with a sling or who found it helped to begin with but then became less effective over time, and the stories of others they have met or liaised with during their search for a solution.

To be fair, most of the examples I have seen relate to men who had no bladder control. It may be completely different if you are having botox because of frequency / retention.

Here is what the NHS website says about it:-

"Surgery and procedures for urge incontinence
Botulinum toxin A injections
Botulinum toxin A (Botox) can be injected into the sides of your bladder to treat urge incontinence and overactive bladder syndrome.

This medicine can sometimes help relieve these problems by relaxing your bladder.

This effect can last for several months and the injections can be repeated if they help.

Although the symptoms of incontinence may improve after the injections, you may find it difficult to fully empty your bladder.

If this happens, you'll need to be taught how to insert a thin, flexible tube called a catheter into your urethra to drain the pee from your bladder.

Botulinum toxin A is not currently licensed to treat urge incontinence or overactive bladder syndrome, so you should be made aware of any risks before deciding to have the treatment.

The long-term effects of this treatment are not yet known."

Edited by member 02 Oct 2019 at 14:23  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2019 at 16:43

Hi Lyn, many thanks for the clarification and the NHS quote. I was a little confused when I got your post because I read it as research  data and it contradicts the information I got from the Urologist and Neurologist. I should say in my 22 year history with MS I have on (many) occasions had two "experts" proffer  conflicting advice (on one occasion I nearly died by being given the wrong advice and I  also damaged my heart by being prescribed the wrong dose of a med.) This is to say nothing of the wacky "cures" that pop up from time to time in chat rooms (3 litres of Pepsi  a day is a guaranteed cure for MS, baldness and the common cold!)At the moment, I am gathering as much information as possible prior to seeing the medics next week and your contribution is certainly helpful in trying to make sense of the greater picture, so many thanks.

I think back to being given a definition of an expert, it was as I remember 

                        "x is an unknown factor and spurt is a drip under pressure!   

Regards  and thanks again Gorry

User
Posted 02 Oct 2019 at 16:48
My two friends with MS swear by cannabis but then others say it is a myth. You can only try what is offered and see how you go.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2019 at 20:15
Hi Gory

I don't having any experience of men having Botox for leakage but my sister had this and it worked for her for quite a few years about 5 - 10 If I remember correctly.

regards Barbara

User
Posted 02 Oct 2019 at 20:20

Hi Barbara, many thanks for your post, given that the alternatives are pretty frightful, if the medics think it's for me, I am inclined to as you say "give it a try" regards Gorry

User
Posted 02 Oct 2019 at 20:22

Cannabis is a lot  more fun than Pepsi (so I'm told!) Gorry

User
Posted 16 Jul 2023 at 18:40

Just jumping in here as Botox has been suggested for my overactive bladder and its lovely hourly  spasms. I have the Supra pubic catheter at the moment. Will report back!

 

Dave

 

User
Posted 16 Jul 2023 at 19:17

Dave,I had Botox a couple of times even though my bladder had shrunk. It did work better the first time than the second time. I have a permanent suprapubic catheter and after trying lots of meds found trospium chroride to be very effective. I have found the position of the the catheter is the main cause rather that just the presence of the catheter. My last catheter was a nightmare,the current one has been perfect. An infection can cause or increase the amount of spasms.

Hope all goes well, are you have it done under general anaesthetic. 

Thanks Chris 

 

 

User
Posted 16 Jul 2023 at 21:23
Hi Chris,

is the trospium chloride for thh bladder spasms?

I have the SPC now but with the flipflow valve- doc says he doesnt want my bladder to shrink but the spasms mean im emptying the valve every hour or 2 wit no more than 100ml

cheers

Dave

User
Posted 16 Jul 2023 at 22:29

Dave , trospium chroride otherwise known as regurin XL 60 was definitely prescribed by a professor at the Christie in Manchester for spasms. It brought my spasms down from around 30 spasms a day to anything between 0 and 2. I have tried oxibutynin, betmiga and some others.

I was going to have a third shot of Botox but after discussing it with my local consultant we decided to stick with the medication,in part due to the difficulty of getting into my bladder. 

I have sill got the flip flo and bag but generally stay on free drainage. Have you tried partly opening the flipflo to reduce to out flow.

Those with long term catheters probably understand that the water in the balloon reduces after a time, I only have 8mls in my balloon,by the time they change the catheter it is down to 3 or 4. I did intermittent self catheterization or dilatation, but only did it a couple of times a week, I found less was better, but I am not your doctor 😃.

Hope you get some resolution.

Thanks Chris 

User
Posted 17 Jul 2023 at 08:44
Chris

i have the flip n flow without a bag at the moment. Could try what you suggest to reduce the spasms but to still use my bladder..

cheers

Dave

User
Posted 17 Jul 2023 at 11:41

Dave , just to clarify, I meant, when draining the bladder only partially open the valve, so it flows out slowly. I found even on free drainage emptying the leg bag produced a vacuum in the bladder that sometimes started a spasm. 

Thanks Chris 

 
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