This is a hard one to write but I think it is vital to share to help others realise how MS impacts your bladder. I am a women in her mid-40's and I have had a child which means I am already more likely to struggle with my bladder. Now add on the fact that I have to drink at least 2.5 litres of water a day - this is for the TaoPatches and for the Coimbra Protocol, then for the icing on the cake we add in MS. All this combined equates to your bladder controlling your life and believe me when I say it is not fun. I've had accidents whereby I haven't made it time and thankfully these have all been at home but today I had close one at the doctors and it made me realise that no one ever discusses this side of MS, so it's important to write about as the purpose of my blog is to help others with MS.
There are several types of urine incontinence and I suffer from Urge Incontinence - this is a psychological based incontinence, which yes you can learn to control it but this is hard work and when you have everything else going on plus a fear of losing control it is a difficult one to face and resolve. When I first met a bladder nurse (before covid) she explained that door key incontinence (which I also suffer with) is never helped by the fact that as children we are taught to go to the toilet before leaving the house - and quite often children are almost forced to try even when they don't need to - so we grow up with that mentality. As we start to get older and struggle more with our bladder due to having children etc we revert to that childhood behaviour of having a quick wee before we leave the house. This becomes cyclical and we almost create the issue ourselves. I am sure many of us can relate to this.
Now add on the fact that I have weak muscles along with other people with MS, this means my pelvic floor muscles are in a shocking state and I can't control them. I can do things to improve this and I was actually recommended a device by my bladder nurse, which I purchased and is sat there in my bedroom. I used it lots at first but then covid hit and life changed - yes I had more time on my hands but everything was just different and my machine got forgotten about. I need to get back to using it as it has lots of functions to assist with improving it - so part of writing this blog is to put in writing that I will made the effort to do the programmes at least once or twice a week as it is important if I want to improve things.
If you are interested in the device it is made by Nu-Tek - it has 20 pre-set programmes for varying bladder issues. It is about £70 and was the one my Bladder Nurse recommended. You can hire a similar device from the NHS but it will take weeks to get an appointment and then you have to go on a waiting list so makes sense just to purchase your own one if you can afford to.
The other thing about my bladder that I've noticed is that it is way worse during my ovulation part of my period. I also notice I need to wee much more during this period - I have no idea why but I do believe that there is a relationship between MS and hormones. This is definitely something I want to look into further with my auto-immune nutritionist as she has a wealth of knowledge and I am sure this is an area we can explore. We are actually just about to do a DNA Health Check which will give me a genetic overview to my health. There seems to be quite a few auto immune symptoms running in my family so it will be very interesting to see the outcome of this - will keep you updated.
As basically I spend my life, planning my water consumption around when I leave the house to ensure I give myself enough time to wee properly before I leave. It is so frustrating that I have to do this and that I constantly think about wee-ing and whether there is a toilet nearby. I really hope the Oxygen therapy will help improve things in this area for me and if I commit to using my machine regularly and get on the floor for some more pelvic floor exercises then even if things improve 25% that will be better than now. It's just another thing to add to my day/life - I don't want to live my life controlled by MS symptoms and this is why I will do everything I can to improve things - I will explore every option and hope that everything will improve in time.
So if you feel like your bladder controls your life then you are not alone - I understand your struggles and I know how embarrassing it feels when you have an accident because you just didn't make it in time, and your stupid brain was just too focused on wee-ing despite the fact that you are trying to tell your brain that it's okay and to relax...
If you have any tips / advice please share in the comments for myself and others who read this.
Is it a bladder pacemaker? If so, I got one put in in 2017 and stopped using in 2019. Didn’t help and was really uncomfortable. It’s still in but I can’t find the controls 😬