A while ago I put a post on my Instagram that said something along the lines of ‘Interstitial cystitis. When you know the location of every toilet in a 5 mile radius’.
The response to that post surprised me. I had quite a lot of comments or direct messages expressing the pain that interstitial cystitis / painful bladder syndrome causes, and the impact it has on people's lives. As well as pain, there is also urgency and frequency of needing to pee to deal with (NHS).
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A referral for urodynamic testing
It was these conditions and their symptoms that led me to having urodynamic testing / urodynamics. I had been offered it about six months ago and put it off. But then the symptoms became too much. And much like when you finally go to the dentist because whatever pain they will inflict on you will surely be less than the pain of the tooth that needs a filling or the like, so you think, the pain of my bladder had become so bad that I actually wanted to have the procedure in the hope that it led to some beneficial treatment.
However, there was something about urodynamics that scared me. I wasn’t quite sure why it scared me so much given all the different tests that I have had over the years. The tubes placed into the more private areas of my body, the occasions when a doctor made a hole in the side of my foot, without any anaesthetic, to put a wire in my nerves, and the tilt tests that nearly made me pass out, just to name a few.
Perhaps urodynamics scared me in particular as I had a cystoscopy a year or so before, and the doctor that did it was very rude, and did a biopsy on me without giving me any anaesthetic. Believe me, that was another cry out loud (actually loud scream) moment.
So I walked into the urodynamics room full of fear. That morning my stomach had been flipping over and my stomach was as jumpy as can be. Just what you want when you have to have a tube up your bum . . . . Thankfully my fears were allayed almost from the outset. There was one specialist nurse in the room, and me. Not the doctor that I was scared of having again, or a lot of people milling about, which tends to put me on edge. The nurse was kind and considerate throughout. She explained what was going to happen, and gave me full respect during the procedure.
Why did I need to have urodynamics?
There are known associations between POTS, hypermobility EDS and MCAS (mast cell activation syndrome), all of which I have, and bladder issues. Those bladder issues can vary widely amongst patients, but for me include bladder pain, urgency and frequency. Luckily, I do not suffer from any incontinence issues.
About eighteen months ago I started to have frequent UTIs. There was about four months when I was almost permanently on antibiotics because I was testing positive for infection over and over again. I felt horrible; headaches, fatigue, frequently going to the bathroom. I was going to the bathroom far, far more often than is usual. There were too many occasions than I could possibly count when I would go to the bathroom, walk downstairs and as soon as I sat down I would think ‘I need a wee’. Literally two minutes later, if that. So up the stairs the bathroom I would go again . . . Those experiences meant that every time I had to go somewhere I was filled with dread about where the next bathroom was. All I thought about, all day long, was my bladder.
Due to these symptoms I was referred to a specialist uro-gynaecology unit, and had a cystoscopy that showed an inflamed bladder. It was then decided that urodynamics should be undertaken to check any problems with pressures or continence issues.
What did urodynamics involve?
The entire procedure probably lasted about 30 minutes, although there was another fifteen minutes of discussion before and after the procedure, including to get the results. So it is fairly quick. The only preparation was to drink up to 500mls of water, starting about an hour before the appointment.
I first had to undress from the waist down and put on a gown. Then the nurse placed two tubes into my bladder, one that tested pressure and the other which enabled water to be pumped into my bladder. As I have bladder pain syndrome this was quite painful, although it only lasted a minute. Perhaps if bladder pain isn’t your issue then you wouldn’t experience pain at that point. Then the bit which I had been dreading the most, a tube up my back passage. It’s just embarrassing isn’t it? Invasive and slightly humiliating, no matter how nice the doctor or nurse who does it is.
After the tubes were placed, the nurse took some baseline measurements of my pressures, which were shown on a computer screen. Then she asked me to do some coughs (coughing it turned out, was a key part of urodynamics!). Once that was done, the nurse left the room and I was asked to go for a wee in a special toilet that measures the rate of flow. Next up came the main aspect of the test, which was to have water pumped into my bladder. I was asked to say at what point I experienced pain (almost immediately), when I felt that I needed to go to the toilet, when I would actually get up to go, when I felt urgent and then, the most difficult bit, when I couldn’t handle the pain any longer.
As soon as I said stop, the pain is too much, the nurse stopped putting water into my bladder. I was asked to do more coughing, then stand up, cough a bit more, and jog up and down on the spot. All very strange! Basically she was testing to see if I had any issues with being incontinent or not. Then she turned on the taps of a sink in front of me, and I was asked to put my hands under the water. As that didn’t cause any problems, I was then asked to sit back on the toilet, but not have a wee. When you have 600mls of water in my bladder, that is really difficult! All those tests are to try and push you as hard as possible, both physically and mentally, and see how your bladder responds.
Finally the nurse left the room, I had another wee and the test was done.
Almost.
Because here is the funny bit. The nurse hadn’t put the jug that sits under the toilet, under the toilet. It was to one side. I hadn’t noticed, nor had the nurse.
So yes, cue 600mls of water / my wee all over the floor. For a second I was horrified. Then, for some reason, I just thought it was funny. Really funny. Luckily, although the nurse didn’t think it was quite so funny, she was perfectly fine about. She said she had to be on the floor paddling about in water most days . . .
Results
Thankfully, as I have already said, the test showed no issues with continence, the structure of my bladder or pressure issues. The problem is inflammation, and the bladder pain that comes along with it. So the test ruled problems out, rather than diagnosing something I didn’t already know about, which is a big relief.
Going forward, I have a clinic appointment to more fully discuss the results in about a month, and have been advised to stay on a low histamine diet due to my mast cell issues (see my pages on low histamine diet and low histamine shopping list). I was also advised to take quercetin alongside my mast cell stabilisers and anti-histamines. Those treatments are specific to my issues, so please check with a doctor before changing your diet or taking a new supplement.
The nurse has also put me on a waiting list for bladder instillations, which I hope will help. I’ve been given leaflets that describe how to try and lessen the frequency of going to the bathroom through waiting set periods of time, which gradually increase, before I actually do so. That's my next project!
I hope that helps, and you find it useful if you think you may have bladder issues or have been referred for urodynamic testing. Do you suffer from bladder issues if you have POTS and related conditions? Have you tried bladder instillations? Do you find them helpful? Would love to know your thoughts in the comments!
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Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this is simply my story and the resources that are helpful to me.
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