So just when I thought my health was settling down again after being attacked by a nasty virus, I managed to go into acute urinary retention again this week. Oh the joy!
On the evening Wednesday 10th December I noticed ( well I couldn't fail to notice) I had a lot of pain in my abdomen. It was one of those pains that you know you have had before but you just can't place it. I ran through the list of usual suspects adhesion's, menstrual cramps etc but nothing fitted the bill. All day I had been having problems urinating but I just didn't realise that this was the source of the pain.
I spent Wednesday evening covered in hot water bottles. My back ached, my abdomen hurt and I was in an evil mood. I am usually quite a relaxed laid back person, so this change in mood was quite unusual. Normally when I am in pain I go very quiet and withdrawn yet with acute urinary retention I become the devil incarnate. I snapped at both hubby and the three dogs. Eventually took myself up to bed so that I could try to get rid of this awful pain and mood.
Thursday morning things were much worse. I could still urinate but it was just a trickle and I wasn't emptying my bladder. I needed to really concentrate on the procedure - something that should just happen and I was having to push (almost like having a baby) to get anything to come out. After a few hours of this I was completely exhausted. As I had woken up at my usual time of 3am - that's a surprise, I rang the doctor's surgery the minute it opened at 8am. Unfortunately the receptionist wasn't one that I normally deal with and was very annoying. She may not have been irritating under normal circumstances but it took all my self-control not to unleash my pent-up fury on her.
After immediately introducing myself as Rachel Morris, I asked very politely despite the rage bubbling under the surface if I could speak to my own GP rather than the duty Dr as my medical history is very complicated. The duty doctor was a locum. At the time I believed I was suffering from a UTI not AUR, so even though it was a simple infection it is not something I would have asked a duty doctor to deal with. Not only is the duty doctor dealing with calls like mine he is also seeing patients. I needed someone who knew my complex medical history. I tried to explain this to the receptionist but it seemed we were in a "computer says no" situation.
To give him his due the duty doctor rang me back within 30 minutes. I have previously had to wait hours for such a call. However I am never straight forward. UTI's tend to have the textbook symptoms of foul-smelling urine and burning when urinating. I have never, not even when I have been hospitalised for a kidney infection had foul-smelling urine or discomfort on urinating. You see my body just doesn't do text-book. My urine sample I had produced because I knew the duty doctor would insist on testing it before giving me antibiotics was slightly cloudy and was an absolute nightmare to gather. The doctor was very nice but clueless when it came to Ehlers Danlos Syndrome and Dysautonomia and I wasn't in the right mind frame to use this as a teaching opportunity.
Fast forward a few hours and the pain in my kidneys / bladder is much worse. It's now a 9 out of 10 on the pain scale. I am unable to produce any urine when I try to go, so things are pretty dire. Hubby was working a late night, as he has taken so much time off for me this year and practically zero time off for sickness himself, I really didn't want him taking the day off. So I pretended everything was ok in the hope that it would be. That backfired spectacularly when I had to ring him just as he had just pulled into the car park at work and tell him to turn the car around.
Before ringing hubby I had rung the doctors so it was all systems go. On my notes it is written that if I am in urinary retention the district nurses have to be called immediately so that they can come to fit a catheter, to avoid having to go to hospital. There were no questions asked as this plan was put in place after the events in June, as if you have gone into AUR once you will more than likely do it again. I had been lucky and managed just under 6 months.
Within 5 minutes the locum doctor who had been a bit of a nightmare earlier rang. He told me he had called the district nurses and they would be coming to me this afternoon. He also gave me a 7 day course of antibiotics. Now normally patients are restricted to a 3 day course. This is never enough for me and I end up having to battle for a 5 day course. A 3 day course just means that the infection won't clear and I will be contacting the doctor again. So despite my confused state it was in shock to learn there would be no battle.
It took over 3 hours for the District Nurses to arrive (not their fault as they have many patients to see and I was an emergency squeezed onto their list). In that time my mental state started to deteriorate. I was sleeping because that was the only way I could escape the pain but on waking I was terribly confused. By the time the nurses arrived I hadn't urinated for 4 hours, not even a dribble despite drinking and self medicating with buscopan. I was so relieved when they walked into my bedroom I could have cried.
Having a catheter fitted means a complete loss of dignity with someone rummaging around in your lady parts, whilst they play hunt the urethra. It is very easy to insert the catheter into the vaginal canal rather than the urethra so hence the rummaging. As I have said on other blog posts I am an intensely private person when it comes to my body. I never flash the flesh and am not comfortable parading around in a swimsuit, let alone having two strangers messing about with my privates. The nurses were lovely at no point did they make me feel uncomfortable and they did everything they could to put me at my ease.
During the catheter insertion I kept getting the giggles as every time the nurse lent over me, my knee hit the iphone in her pocket and it would start playing music. I don't know why it made me laugh so much but it really did. It turned what could have been quite a humiliating experience into a surreal one. Its difficult not to giggle when music is emanating from your nurse.
My previous experience of catheter insertion and removal has been incredibly painful so I was quite hesitant to have it done again. These two knew their catheters and it was completely painless. I was aware that there was a plastic tube going up my urethra but it wasn't agony like it had been in June.
It wasn't plain sailing though once the catheter was in, my bladder valve clamped itself around the tube and refused to release any urine. Much to the consternation of the nurses who had never seen that happen before. Unfortunately I have, it happened when I had the first catheter fitted at home and it happened again in hospital the following evening when a new one was fitted after the first one had blocked. For the next 10 to 15 minutes the nurses and I tried everything to get my bladder to empty. It wasn't playing ball and then out of nowhere I started to get bladder spasms. If you've never had bladder spasms thank your lucky stars. I am good with pain but these little buggers will drop me to my knees in an instant. They also increase in intensity. After much muffled screaming, I begged for the catheter to be taken out. It was removed and I shuffled as fast as I could to the bathroom.
After a bit of hesitancy the valve opened and I did the biggest wee in history. I shouted to the nurses that I was going to be some time, which was met by them with cheers and clapping. As soon as my bladder started to empty the bladder spasms subsided. Both the nurses and I have no idea why after not going for hours or releasing any urine into the catheter, my bladder decided to kick into action again. As I have said before though, none of the illnesses I have had in my life have ever followed what is written down in medical textbooks.
The district nurses are contacting my GP to insist that I now get taught how to self catheterise so that I can to avoid needing an indwelling catheter fitted. Self catheterisation would be a good thing to be taught as I am having more and more days where my bladder refuses to empty properly. Hopefully if I was taught this I could avoid going into acute urinary retention and hubby wouldn't have to take emergency leave for this issue.
It took from the Thursday afternoon until the Sunday for my bladder to finally get back to normal. I have been left once again feeling very drained by it all. I have been sleeping during the day (pretty much unheard of for me unless it's a postprandial episode) and have zero energy. This has left me stressing out something stupid over Christmas which is rapidly approaching. I am trying to calm down a bit and stop making everything into a big deal.
As this is my last blog post before Christmas, I would like to wish you all a Merry Christmas and a Happy 2015.
4 comments:
hope your starting to pick up a little now. what a nightmare to go through. best wishes for you + family, and of course the woofers. em x
Hi Em,
Lovely to hear from you.
I am feeling a lot better now. Everything is finally back in working order I just have the insomnia to crack and I will feel on top of things.
I hope you and your family have a lovely Christmas and the doggie xxx
Look after yourself.
Rach xx
Hi,
I have the same problem(s)...I insisted they teach me to self cath as I wouldn't let them do it for me and would have probably died first. I have EDs and HyperPOTS and periodic paralysis but they haven't identified the cause of my sporatic urine retention yet.
HI Anonymous,
Thanks for leaving a comment.
Sorry to hear you also suffer the same problems.
Thanks
Rach x
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