I have a wee problem and it has been quite a journey! Bladder problems are common in people with Multiple Sclerosis. For some, the need to go is urgent and frequent and for others a little help is needed for the bladder to empty. Sometimes it’s both, that’s just how Multiple Sclerosis works. Keep in mind that this is just my story, this is not something that happens to everybody and what works for me will not work for everyone.

My journey started a year or two after my diagnosis. Usually what happens is that the bladder fills gradually, sending a trigger to the brain to let you know that you need to visit the toilet. I started to find that my trigger wasn’t firing correctly and I would get the message a tiny bit too late meaning that I would have to sprint to the toilet or have a wee accident. Let me be clear at this point, by sprinting to toilet I mean hobble using my walker (in my head it’s a sprint! Now that I mention it when you’re desperate for the toilet it really feels like a marathon). Isn’t it cruel to develop a weak bladder at a time were your mobility is tricky? I was so worried that I would have an accident that I began to wear sanitary towels everyday. At this time, there were not that many products available in the supermarket for bladder weakness problems and the items available were expensive. The more these products are advertised, the less taboo there is about the subject and this is fantastic! After speaking to my neurologist, I was prescribed a tablet to assist my bladder in firing the trigger correctly. This gave me back some of my confidence and for a time this worked really well.

Then suddenly I could not empty my bladder. I felt like needed to go, but nothing happened. Super Sarah had me up and down all night to the toilet as the trigger was working fine and I really felt like my bladder was full. But I had no success. In the morning I was starting to feel uncomfortable so we tried all the usual tricks. Caffeine often worked a treat and usually had me visiting the bathroom constantly for about three hours but again no success. I had a very important meeting with the doctor at the Spasticity Clinic and I didn’t want to miss this so despite my discomfort, Super Sarah and I made our way to the hospital.

My bladder was starting to feel painful now and in the meeting they wanted to play with my legs to test the spasticity but I had to explain what was happening with my bladder. When we mentioned that had been about 13 hours since I been able to pass urine, the doctor wanted to try something and tapped my bladder with her finger. It was blindingly painful and frankly I’m surprised she came out of this meeting without an injury! (Despite this introduction, she is now one of my favourite doctors). Super Sarah and I were immediately sent to Accident and Emergency.

The issue I was having was urine retention and it is very serious. Thankfully, this meant that I was taken very quickly. Unfortunately, spasticity made things very difficult for the doctors and nurses trying to assist me. They needed to insert a catheter into my urethra to drain my bladder but my legs were clamped shut so that their job was impossible. In the spells when my legs relaxed, my urethra would not corporate. I was in an unbelievable amount pain by this point and was given some pain relief to help. Just an FYI, I was still in an awful lot of pain but I felt a little bit like I was flying so it meant that I was distracted from what was happening further south. It took about 20 nurses, three doctors and over two hours but finally catheter went in. Very quickly the pain started to subside and I just wanted to cry with relief, I can honestly say that I have never felt pain like this.

The average bladder can hold up to 400 millilitres of fluid. Over a litre of fluid was drained from my bladder. No wonder I was in so much pain! The catheter needed to be kept in place for two weeks before visiting urology to have it removed. I did not realise just how many people were present at the meeting at the Spasticity Clinic, there was a panel to assess my level of spasticity and the best course of action. Yet every time I visit a hospital or Medical Centre, someone looks at you strangely and then recalls ‘you were the girl in the appointment with urine retention weren’t you?’. I honestly can’t believe that is what I am well-known for!

The thing is, those two weeks were a revelation. Super Sarah didn’t have to take me to the toilet multiple times throughout the night and we managed to catch up on so much sleep! And because I could empty the leg bag attached to the catheter by myself, I experienced independence for the first time in years! One day I went out for a roll mobility scooter and did not return home for about six hours. It was a lovely day and I followed the local cycle path that led to a shopping centre. I didn’t expect to actually go this far but it was just wonderful to have some time to myself and not worrying about having to go to the loo! I did a little bit of shopping, went for a coffee then headed home. Super Sarah greeted me at the door with a huge grin as she could see how much freedom that the catheter offered me.

The evening before visiting urology I cried. I cried for the independence that I was going to lose, I cried for the full nights of sleep that we were both going to lose and I cried as I thought about the dashes just to toilet that would inevitably happen again.

At urology the nurses removed the catheter then made me drink rather a lot of water. At the time I remember thinking that this was kind of cruel however they needed to check that I could pass urine and the only way to do that is to fill you with fluid! A short time later, I started to feel the sensation that I needed to urinate however I went into retention again. Thankfully, I was in the right place and the catheter was inserted again very swiftly so I did not feel pain.

Super Sarah and I were relieved in a way, it really did feel like this was the best fit for me going forward. But it soon became apparent that there were other issues. For example, it’s not exactly comfortable being female and sitting with a catheter in the urethra. Unfortunately, the worst part for me was Urinary Tract Infections (UTIs). I had them frequently. I had them most months and felt very ill, and even with antibiotics on two occasions they turned to sepsis and I had to be rushed to hospital.

When it came to having the catheter changed, this needed to happen every 12 weeks, because of my spasticity it was increasingly tricky for the nurses. My legs clamped shut and the nurses needed the opposite to happen for them to do their job! After particularly embarrassing catheter change involving five district nurses, a Super Sarah and three catheters I was scheduled for small operation to have suprapubic catheter. For me the operation lasted one hour and it involved the insertion of a catheter directly into the bladder. This has significantly reduced the number of UTIs and it has made the district nurses Job a lot easier as they no longer have to wrestle my legs! After the operation, I only felt a little pain when I laughed or moved in a particular way. Two days after my operation we went to the cinema with friends to see the new Jumanji featuring Dwayne Johnston and Karen Gillan. Anyone who has seen this film will know how intensely funny it is to every time I laughed felt a slight pang of pain but the film was so entertaining I didn’t really mind!

It was quite a journey but I finally found what works for me, helping me retain my independence as much as possible and allowing us to have better control over my wee problem.