MS Botox bladder injections are life changing
There are very few things that really improve the quality of my MS addled life. A few days ago I had MS Botox bladder injections for my squiffy bladder. An elephant left the room within 24 hours. Now I can casually stroll past a loo without thinking “Golly I must go in and have a pee”. Now no more inserting a catheter while my bladder was leaking because of a spasm. The humiliation is impossible to describe. The MS Botox bladder injections were only 15 months overdue.
Thursday, 13 August 2020
The consultant administered 20 little injections of Botulinum toxin into my bladder wall at noon, the stress and anguish that fell off my shoulders was indescribable. For the last six months I had to go to the loo every 2 hours during the day; my bladder ruled my life.
If I needed to go to the loo I could barely hold on. If I dawdled then I wet myself and there was nothing I could do. The feeling of helplessness and frustration were with me 24 x 7. Too often I was still stumbling towards the loo after the 15 second warning bell before the contents of my bladder came out to say hello and humiliate me.
The previous 6 to 8 months were enough to make a hermit’s existence look like fun. Anything that irritated the bladder was a no-no so I could only drink tepid water and decaffeinated tea or coffee. Can you imagine having a cold G&T without the G or ice.
Middle of July
I received a phone call from the clinic saying that all Botox treatments in August and September were cancelled including mine. Mid August for my Botox bladder injections was the anchor holding life together. I felt too shocked to wail or gnash my teeth. Instead I took a deep breath and calmly explained how close to ground Zero I was now feeling. Two days later I received a phone call and was told the appointment had been reinstated. It felt as if someone had turned on the light in the dark room. Suddenly I could see the door and once again plot my path to freedom.
Second week of August
“Only 7 days to go now. Change that to only 168 hours”. I was in serious countdown mode. When it’s less than ninety nine I will start to dream.
Three days before the procedure I asked The Wife “How are we going to celebrate on Thursday?”
“Well, that’s up to you”, she answered.
“The evening will be the best time. Let’s sit outside in the garden and celebrate with an Aperol Spritz”
Botox bladder injections
On the day the procedure went really well. The consultant suspected that my problems were caused by an enlarged prostate, the curse of elderly men. She put a camera into my urethra and showed me the offending part of the gland. I told her I had been taking finasteride for a few months.
“After about 6 months”, she said “the prostate will start to get a bit smaller and you will find it easier to do Intermittent Self Catheterisation”.
A week later
The MS Botox injections have really worked. The distress to my daily life just melted away and on Thursday night I truly enjoyed my Aperol Spritz. Yup, Botox injections are life changing.
An MS crisis with my dysfunctional bladder
Feel very pleased for you. Whenever though I read a post like this I ask how on earth do I get such a drug! I have never found a way of getting anything like that. My Cladribine treatment ended in 2018, my PPMS is now progressing and like many others I’ve been told there is nothing more that can be done. Therefore am left to wilt away. Am trying but like with everything I’m not lucky enough
I don’t know where you live and this will affect availability of drugs. In the UK it is always a bit of a postcode lottery so it depends where you live. Queen square in London is a good centre for people with MS. For Botox I would suggest you get a referral from your MS nurse. If you have PPMS then I would suggest talking to your consultant about Ocrelizumab, a drug that is now available to people with PPMS.
I am with you on this feeling of being cast adrift. Not enough people truly understand MS, just don’t take ‘No’ for an answer
If catheterisation is an inevitable part of having Botox, could you not have self-catheterized before the Botox injections, thus not risking wetting yourself? Also, could you not have worn pads? With catheterization, is there not increased risk of infection?
Lots of questions and not all the answers are so easy. Before Botox going for a wee every 2 hours, now about every 5 or 6 hours. Wearing pads sounds all fine and dandy but actually they are uncomfortable especially when wet and they do not always absorb all the urine. Botix paralyses the bladder wall and you only wee by contracting the muscular bladder wall. Botox is effective at stopping the bladder having a spasm for about a year but still some effect even after two years. The choice is either a suprapubic catheter or self catheterisation. For a male a UTI is a rare occurrence.
Such good news for you and for the rest of us
This was my third round of Botox. The colossal delay means that I appreciate the benefits more than ever