Sunday, 29 November 2015

Health Update

Hello dear reader, I hope you are well.

So, I had my hysterectomy four days ago, and I thought  I would update on my recent health issues.

The hysterectomy went really well. The op was straightforward, there was a lot of endometriosis, but it was old (shrunk by the Prostap) and had not ventured from my womb.  Hoorah! My bladder, which has been the cause of much mischief, was free of endo, which is excellent news. That means that it hasn't spread much at all; hopefully it has gone and will not self-perpetuate (endometriosis is womb lining tissue which escapes and buries itself into other muscles and organs and swells and bleeds each month, and can be found as far away from the womb as the lungs or back of the eye. It can self-replicate once it has escaped from the womb. This means a hysterectomy is not always an effective treatment. However, in my case, I seem to have escaped lightly.)

I was given a trial without catheter on the ward (TWOC) the day after my surgery. Last time I had one of these, about 8 weeks ago, I could  not ring out a single drop. I squeezed, pushed, shook, danced, stood up, walked around - nothing. This time, the good news was that I could pee each and every time I needed to. HOORAH! 

However, it became evident that I did not have the normal sensation that I needed to pee - I just felt crampy pain and a vague anxious / panicky feeling. I had my bladder scanned after voiding and it was discovered there was still 300ml retained in my bladder - so I evidently wasn't able to accurately feel if I had emptied properly either.

This could not go unchecked. Retaining urine puts pressure on the kidneys. Only one of my kidneys works, and the other functions at 70% (probably caused by chronic retention) so I need to be very careful with that remaining function. I do NOT want to end up on dialysis because that is a one way ticket to transplant - if you are lucky. I need to ensure that my bladder is properly drained at all times.

On this note, it was interesting to see I pass about twice as much pee as all the other ward inhabitants. This is not necessarily a good sign (it can mean that your kidneys are on their way out) but it might only mean that I am drinking more than other people. Hard to call. Interesting comparison you don't get elsewhere though.

I agreed to trial Clean Intermittent Self Catheterisation - which is a fancy way of saying you do a wee, then put a medically packaged McDonald's straw up your urethra four times a day. I tried, and was successful at first. However, it was really painful - unsurprisingly, as I'd had surgery the day before. Eventually the panicky feeling increased and the amount I passed decreased and I was left as dry as the Sahara. So that was a bit of a fail.

I was finally discharged with what I went in with: an indwelling urethral Foley catheter. It's not that bad though, it's an inconvenience more than anything. People live with much worse. I am quite used to it now and, handing control of my catheter over to the nurses after my surgery, I realised quite how skilful I had become in knowing without looking when it needs changing, how to position it for maximum comfort, etc. 

I don't know what the future holds. I will have an appointment with the Urologist at Castle Hill again in a few weeks once I have recovered physically from surgery. I am guessing they will want to do another TWOC and possibly another Urodynamics test (possibly the least dignified thing I have ever endured: tubes are placed in your bladder and up your bum. You are then sat on a toilet seat with a jug underneath whilst a nurse makes small talk, and simultaneously fills your bladder and bum with cold water until bursting point. If I live to be 100 I would be happy not to have to endure that again...)

There has been talk of an MRI. From the reading I have done, it could still be "one of those things" right down to MS (nerve damage). I have no malignancy, and now I have no endometriosis or prolapses, so those are 3 big causes ruled out.

I'll be honest: it frightens me. I want to get my life back and I want to get back to running. It's hard to see how that is possible with a catheter. Also, the idea of MS is just terrifying. I have to believe that if that were the case I would make the very best of the hand that is dealt to me, but I pray that it's something straightforward. I believe it's uncommon for women to go into total urinary retention, especially younger women. The prime causes are childbirth damage (not applicable to me) or a condition called Fowlers, where one of the urinary sphincters doesn't open properly. I don't believe I have this issue either, as my entire bladder is atonic, and my sphincters seemed fine (and that, my friend, is a phrase I thought I would never write... )

However, let's look at the positives. 8 weeks ago my bladder could do nothing. Now it can pee. Whistling - genuinely - helps. I picked up this tip from a fellow patient on the ward; apparently her Mum was taught to blow down a straw and this helped her train her bladder.

If you imagine a balloon that has been blown up and then deflated, it goes all wrinkly and can't hold it's prior shape. It's very possible that when I had the episode of acute retention in September this is what happened. They drained 2.5 litres from my bladder in one go - that's a big and a small bottle of Coke. It's possible that my bladder just got over stretched and the catheter is just giving it a little holiday whilst the muscle recovers it's tone. That is the explanation that I am thinking is most likely, right now.

Right - now I have filled you in on the medical gossip, I will sign off and eat my dinner. I am feeling loads better than expected after the surgery. I am a bit achy and sore, but that is to be expected, and a bit cabin feverish and grumpy because I am a terrible patient. I have just taken advantage of Craftsy's Black Friday offer and signed up for 7 online craft courses; that should while away the hours of my sick leave and allow me to do something useful with my brain. I had *one* day of daytime television today and it brought on the Grumpy Old Claire show. I promised myself I would do something more productive with my time.

Claire x 

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