Acute Urinary Retention .....again.......

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 Normally when I am in pain I go very quiet and withdrawn yet with acute urinary retention I become the devil incarnate.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.

Permission denied

I have a real problem with some medical staff here in the UK. My problem is they seem to have forgotten that my body is mine and that I have the ultimate say on whether they examine me or not. I think many medical staff have become so caught up in the job that they no longer see the patient as an individual who has autonomy over their body. Permission is not being asked for before intimate examinations are taking place and in my view hundreds if not thousands of patients are being assaulted every day in the UK through medical staff treating a medical examination as something that the patient has to have rather than asking for their permission.

You may think I am over reacting but where else outside of a hospital would you allow someone to touch you intimately or remove your clothing without consent? It simply doesnt happen and if it did the police would class it as at best assault and at worst sexual assault.

It makes me extremely angry that medical staff are routinely ignoring the patients right to say no and either putting pressure on them to consent or carrying out an examination without consent. If you think this doesnt happen I can give you two examples of when it has happened to me whilst in hospital and these are in 1998 and then again in 2014. In my opinion this has got worse not better. Implied consent is not enough and it isn't under the law also. I dont think it will be long before a member of the medical profession will be prosecuted for assault in this country due to either assuming that a patient has consented because they are there or carrying out an examination / removing clothing without the patients consent.

Obviously in an emergency situation -  the patient is unconscious etc then yes consent does not need to be sought. I dont have a problem with those situations, I have a problem with a fully conscious and alert patient being bullied / coerced into an examination or not actually being given the opportunity to decline the procedure / examination.

In 1998 I had quite a serious operation and was opened up from just below my sternum to my pubic bone. The operation was to remove adhesions that had grown around my bowel and had stuck my intestines to my abdominal wall. I was told by the nurses this was one of the most painful operations you can have and I can assure you it was a 10 out of 10 on the pain scale. I had a morphine pump that I could self administer morphine with and I was allowed to press the button every five minutes. I would lie there watching the clock count down for my next dose because what ever was administered wasn't enough to take the edge off.

 I was dazed and confused the following morning after the operation and in agony when two health care assistants whipped the curtains around my bed and informed me they were there to give me a wash. I wasn't asked "would I like a wash?" I wasn't asked if I wanted two complete strangers to strip me naked, I wasn't asked if my pain was adequately enough controlled that I could get out of bed without screaming. It was presented as a fait au complet, I had no say in the matter, I was being washed whether I wanted them to or not. I cried and cried begging them to leave me alone, that I wasn't well enough to stand and be washed. My cries fell on deaf ears, they pulled the sheets back and proceeded to man handle me out of the bed. I cried with the pain and humiliation of it all. The hospital gown was soaked in blood and stuck to the dressing that covered the wound, gentle they were not. It was ripped off me and I was left there standing naked with nothing to preserve my dignity.

I am an intensely private individual when it comes to my body. It probably stems from low self esteem. I always dress modestly, I don't wear string vests in the summer I wear t-shirts. I don't really wear shorts outside of my house. When I was younger when I wore short skirts ( as was the fashion then) I wore thick black tights. I just don't feel comfortable flashing the flesh and can probably count on one hand the number of people who have seen me in a swimming costume. I just don't whip my body out and display it. I take my hat off to anyone who can flash the flesh but its just not me.

So standing there that morning in the nude in front of two strangers was humiliating. I was vulnerable and helpless and they did nothing to put me at my ease. I had been bullied and coerced into being washed. I could have managed to gently wash myself in bed had I been given the option but options were not offered. My consent was not sought and this is what I am talking about, staff ignoring patients and not treating them appropriately. Where else in life would this situation come about being stripped naked by two strangers against your wishes? Anywhere else this would be seen as a criminal offence yet this regularly goes on in hospitals up and down the UK.


These things shouldn't be happening but they are, fast forward to April 2014 and I am back in hospital for my octreotide trial. Within 30 minutes my dignity is being challenged when I am informed that I will have to be swabbed for MRSA. I stupidly assumed that this would just be a nasal swab but oh no its a nasal swab, throat swab and perineum swab. Not only do I have to swab my ring piece (well practically) but as privacy and dignity are lost as soon as you enter hospital I have to be observed doing it to ensure I swab properly. How hard is it to rub a long handled cotton bud on your perineum? 

This wasn't the only issue I encountered whilst in hospital but thats a whole other blog post! 

On the evening of my admission I kicked up a bit of a fuss due to issues with my medication which was being administered at the incorrect doses. After the pain medication issue was sorted out a nurse and a healthcare assistant came into the room whipped the curtains around and without even talking to me started to remove the bed clothes. I sat bolt upright and demanded to know what they thought they were doing. The nurse answered and said "We are checking you for bed sores". There was no "we need to check you for bedsores is that ok?" or " is it ok if we check your body for bed sores?" Again it was treated as a fait au complet, which now being older and wiser I knew it wasn't. I quickly informed them as I had only been on the ward 4 hours and was checked earlier permission was denied. This didn't stop the nurse who then started tugging at my pajama bottoms to remove them. I jumped back and said " take your hands off me, continue and I will call the police, what you are doing is assault". She jumped backwards and said "we have to check you for bedsores". It didn't seem to compute with her that I was completely within my rights to refuse this.

She started to give me a long talk about bed sores and why it was important that she check my buttocks, back and heels. When she realised she had failed to persuade me she gave up. A weaker more vulnerable patient wouldn't have put up a fight. 

The next morning whilst I was chatting to the pharmacist about my medication a health care assistant waltzed into my room and announced she was there to wash me. She didn't introduce herself or seem concerned that a male member of staff was in the room and perhaps I wouldn't want to strip off in front of him. My dignity seemed to be the last thing on her mind. When I declined the offer of a bed bath with an audience she didn't like it. I told her I would be taking a shower and then again I was told she would have to watch me. I joked with the pharmacist that all the staff on the ward were a bunch of perverts. The health care assistant stropped off. I simply waited for her to be distracted by someone's bell to go off and took a shower without being watched!

I am still incredibly angry that medical staff seem to think their job overrides my dignity and the need for my consent. They need to understand that they have to ask for my consent directly and not assume implied consent because I am in the building. The NHS has produced this document Reference guide to consent for examination or treatment it clearly states "This booklet provides a guide to English law concerning consent to physical 
examination or treatment. This second edition provides an update on legislation 
relating to obtaining valid consent – the Human Tissue Act 2004, the Mental 
Capacity Act 2005 and recent legal cases – and provides references where appropriate."

It goes on to say "Valid consent 
1. For consent to be valid, it must be given voluntarily by an appropriately informed 
person who has the capacity to consent to the intervention in question (this will 
be the patient or someone with parental responsibility for a patient under the age 
of 18,11 someone authorised to do so under a Lasting Power of Attorney (LPA) or 
someone who has the authority to make treatment decisions as a court appointed 
deputy12). Acquiescence where the person does not know what the intervention entails 
is not ‘consent’. "

If the NHS has this booklet circulating then either the issue of consent has been an issue for them or they are aware that many medical professionals are working under the notion of assumed consent. Whatever the issue it is clear that the education of its staff is not working. Since my experience in 1998 things haven't changed and thats not in the patients best interest.

I am sorry this is such a long post but it is something that I am very passionate about. Patients are unaware of their right to say no and staff seem to be happy to keep it that way.

Sources:
Reference guide to consent for examination or treatment

BMJ Paternalism or partnership 

Are women sufficiently well informed to provide valid consent for the cervical smear test?

A fundamental problem of consent