Well this morning was an appointment with Urology nurse. Always an embarrassing enterprise to deal with sort of thing but I’m determined that this Blog will be as honest as I can be, as open as I can manage and as helpful for others going through similar issues as possible.
So…a little bit of history before I launch into this.
As you’ll know I have Multiple Sclerosis, the MonSter that can produce whatever symptoms it wants to whenever it feels like it and is sneaky….oh so sneaky.
Well I’ve had problems with my bladder for a while now, being nicknamed ‘Tena Lady’ by my friends at Uni as I was always running to the loo between classes! Urgency was always an issue, when I had to go I HAD TO GO but over the years I also developed problems with urinating at all! I would feel desperate for a wee but when I got there…nothing, not a drip no matter how long I sat there. The sphincter just wouldn’t co-operate and because I was retaining too much urine I ended up with so many UTI’s I’ve lost count.
Finally when I got to see a Urologist after my GP’s trying and failing to find a solution (they tried though bless them) and entered the world of ultrasounds, examinations and having how much I pee being a thrilling topic of conversation.
I had amongst others, a Urodynamics test…rather embarrassing and if you look at the photo below…rather similar to the weirdest form of torture you can think of.
It was during this test they realised that my urethra was constricted, they couldn’t get the catheter in and believe me when they finally did it stung just a tad! You have your bladder filled with fluid through this contraption until you feel like you can’t take any more then have to hold it (or at least try to) whilst sitting, standing, coughing etc. It didn’t show much, I had mild control issues but the major thing was that the communication between my bladder and the sphincter just wasn’t there. My bladder contracted away but the sphincter wouldn’t co-operate.
This all lead to me having a minor operation where my urethra was re-expanded and the scar tissue that had built up was removed. Uncomfortable? yes it felt like I was peeing glass for the next two weeks but very worth it! I could pee freely again! Along with this my medication was changed, the urologist put me onto Solifenacin and I only wish I had been on it before 🙂
Once I had healed from the op it was obvious I was still not completely evacuating my bladder, I had scans on a regular basis to check how much was still there after I had been to the toilet and it was decided I needed to self catheterise.
This scenario horrified me. What if I couldn’t do it? It had hurt when the nurse tried to what if it was too painful? When I learnt how to do it would I have to have a nurse show me and see my nether regions again? What would I do when I was out and about?
Luckily one of my friends has been through this and she talked me down from the ledge over it. She convinced me to at least try and see if I could do it saying it was no worse than using a tampon once you got used to it. Along with the lovely people at the MS Societys’ website she calmed me down and I got up the guts to do it.
Now don’t get me wrong, the first week was hell! I couldn’t do it! It was painful for me as my Urethra had constricted again, I couldn’t get the angle and trying to do it without getting wee everywhere…well it took some fighting to make myself carry on. It took a change of catheter and a lot of trial and error to get to the stage I am now, where it really is like putting in a tampon…it has to be done and I’ve got the technique sorted so I don’t make any mess 😉
Well back to the title of this post….I went to see the nurse again this morning with my past couple of weeks of volumes on a sheet of paper. She has a look and is very surprised that they are so low, we do an ultrasound and I get a shock….My bladder is empty! It’s never been empty in all the time I’ve been having this done! She’s recommended that I only need to self catheterise a couple of times a week and I was so giddy as I left her office I must have passed on the smile virus to lots of people!
These little victories over the MonSter are so important it’s hard to believe but they make all the difference. The catheters and medications may not be going out the window yet but at least I know they’re doing the job I need them too 🙂