The last week

The last week has been very up and down so this will just be a quick update.

 

I want to thank everyone who sent me messages of support after last week’s blog post it meant a great deal to me. Many of you I only know through blogging and we have never met in real life, thank you for showing your support.

 

On Friday last week I had a phone call from the bladder and bowel care team (I get a yearly phone call). On this occasion I was telephoned by the lead nurse, this was the first time I have had any dealings with her. To put it quite bluntly she was horrified that I had been shown how to catheterise and then left, with no investigations taking place. Especially as my symptoms are indicating Fowler’s Syndrome. Whether it is or isn’t she couldn’t comprehend why I had never seen a urologist. The plan is now that as soon as my CSF leak has been treated (and hopefully fixed) I will see a urologist and have the relevant tests. The head nurse is also going to ring me once a month to keep in contact. It was so nice having contact with someone in the medical profession who listened and wanted to do something.

 

I had a good two days over the weekend,  this would have possibly lasted longer had I not decided to push my luck and help out a friend by putting together a CV (resume). It took much longer than I had anticipated and by Monday evening I could have cried my head was hurting so much. Every time I raised my head from the pillow the pain throbbed with every beat of my heart. It hasn’t settled since and yet again I am writing a blog post laid flat with my chromebook balanced on my knees so that I can see the screen.

 

I am hoping the coming week is kinder and the pain starts to settle. I am chasing my gp today to find out what is happening with my epidural blood patch as I have heard nothing from the hospital as yet.

 

To cheer myself up I have bought some plants for the garden, if it is dry on Sunday I will be issuing planting instructions to my husband. I am hoping the weather settles soon so I can lie down outside rather than being stuck inside all the time,
So that has been my week, very rock and roll!

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My Urethra moment!

**** Graphic Content Warning****



No I didn’t spell eureka wrong, you read the title right. It is a deliberate play on words. I want to talk about self catheterising in this post, so if you are of a delicate constitution or think this couldn’t happen to you please stop reading now. I will be approaching this subject in my usual no holds barred type of way because I believe in honesty and not sugar-coating things.

My appointment with the continence nurse came around all too quickly. Nervous didn’t quite cover it. From June last year various health professionals had decided that I needed to be taught how to self catheterise  due to a bout of acute urinary retention. This is where for some reason, usually neurological, the valve at the neck of your bladder refuses to relax so that you can produce urine. When it happens the pain is immense. You have the feeling that you urgently want to go for a wee but you either can’t go at all or you just have a drip, drip, drip of urine. Which doesn’t empty your bladder and you have the sensation your abdomen contains a balloon that could burst at any moment.

 The home visit from the nurse had been set up to teach me how to insert a catheter myself, preventing acute urinary retention from happening and thus negating the need for me to have to wait to see the district nurse, who would fit an indwelling catheter which would be left in situ for a few days increasing the risk of infection. Plus last time I had an indwelling catheter (this just means I have a catheter that is connected to a bag in which the urine is drained. It stays in place by means of a small saline filled balloon that sits on the bladder neck. It is uncomfortable, embarrassing and difficult to dress around. The urine collection bag is strapped to your thigh so you can not wear close-fitting trousers. You also have the constant fear that the bag will burst!) it blocked the next day leaving me in agony as my bladder went into spasm.

A few weeks before the nurse came to my home, I was sent a booklet explaining how to self catheterise and also a DVD – which I will get to in a moment. The booklet contained illustrations which featured a woman self catheterising, it was done in a tasteful way which didn’t really address the situation head on. To self catheterise you are going to have to get really familiar with the geography of your nether regions. I mean let’s be honest how many of us could look in a mirror and identify where the entrance of our urethra is? You know (if you are female) you posses a clitoris (yes I said the C word!) a vaginal canal but where do we pee out of? Have you ever looked or felt? I mean why would you? I know I hadn’t until last week.

It’s not a subject we females feel  comfortable discussing, it has only become an acceptable concept of late that the female of the species do masturbate and enjoy it. However it is rare to find a woman who will openly admit that she does. The female genitalia still seems to be shrouded in mystery and to openly admit you’ve touched yourself in that area is still met with wide-eyed horror. It is accepted that men do it so why all the fuss about the other 50% of the population? 

I knew the rough geographical location of my urethra but only after watching the DVD from which I am still baring the mental scars. I don’t know what I was expecting when I watched the DVD the day before the nurses visit. I knew it wasn’t going to have much of a storyline and had prepared myself for the possibility that there would be an animation demonstrating the catheters insertion. Oh how wrong I was! Out of no where it cut from a scene of an anonymous woman washing her hands to me being confronted with a woman’s nether regions, accompanied by music and a voice over of how to place a catheter. I am not a prude in any way, shape or form but I was taken by surprise at the graphic nature of the content. As a woman (if you are heterosexual), unless you are a Doctor, Nurse or Midwife, we don’t get up close and personal with another females genitalia. So viewing one on a 40 inch HD TV did come as a bit of a shock. Especially when there was no warning on the DVD cover that this would be the case.

Once I had got over my initial shock, some of which was based on my fear of the procedure, I had to agree it had been quite helpful. I now knew where my urethra was to be located. As a help for those of you who don’t know below is a really crap drawing of which I am the artist. My husband said it looks at worst like a road map containing several roundabouts or a piece of abstract art at best!

I decided that I would learn how to self catheterise by touch alone, this was after much consultation with my sister who before having a sacral nerve stimulator placed was in the same boat as me and had needed to do this also. She told me that you needed three hands to be able to insert the catheter. One to hold the mirror (if you are doing this by sight), one to hold the labia open (so that you can see your urethra) and one to insert the catheter. The catheters that are provided for you to use do not tend to come with bags like the indwelling ones do, so you have to catheterise over a toilet. My sister informed me that the bags that can be provided are not very reliable and can leak. My sister was taught in a hospital setting, lying on a bed which doesn’t transfer well when you are at home trying to do it on the toilet. 

Doing this procedure by touch alone meant I needed to know what my urethra felt like, so I had to have a rummage. I found it easy to identify as the opening although small does have a different feeling to than the skin around it. Under the tip of my finger it felt like it had a slight wavy edge  and it dips in, so it is not flush (sorry couldn’t think of a better word) to the rest of the area around it. It took a little time to suss out but I wanted to be confident that before the appointment, I could at least identify the area of my anatomy that would be coming under close scrutiny!  If you are going to play hunt the urethra yourself just because you are now curious, go ahead however make sure you do so with clean hands. Self catheterising is taught with a clean hands approach to avoid infections, so even just trying to find it should be done in the same way. Infections are easily transferred into the urethra – even wiping the wrong way can do it so please ensure your hands are very clean before having a rummage.

The morning of the nurses visit I was absolutely terrified, my heart was racing (nothing new there) and I felt sick. I was convinced that I wouldn’t be able to do it and the nurse would have to come and help me. I am intensely private about my body. You may now be falling off your chair laughing right now. What I mean is I find this stuff easy to write / talk about but to show you any part of my body that would normally be hidden under clothes just isn’t happening! 

The nurse was really lovely and incredibly funny. She put me at ease immediately which helped me relax (a tiny bit). I couldn’t relax fully as I knew at some point I would have to try to insert a catheter myself. She was very pleased that I had watched the DVD, read the booklet and had located my urethra. She told me it wasn’t uncommon to speak to women (of all ages) that had no idea that they didn’t urinate out of their vaginal canal. Also due to the taboos surrounding vagina’s, many of  the women she see’s hadn’t examined themselves to locate their urethra. I know psychologically it is a hard thing to admit that you need help to urinate, maybe the women’s refusal to examine themselves is also part of that mental block? My thinking was if I found it myself I wouldn’t have the nurse showing me, maintaining my privacy. 

The nurse was a bit like a travelling sales women, with her large black bag which contained  a vast array of catheters. Who knew there were so many different types and so many different sizes? The two I decided to have a try with are pictured below. The green one is  a Coloplast, which has a more rigid tube and the Hydrosil Rose which is made from silicone and is more flexible. Both are self lubricating. The Hydrosil Rose as you can see has a silver packet in it which contains sterile water. Before opening the packet you pop the bag by folding it over and then the water activates the lubricant on the tube. The Coloplast also is lubricated and that is released when you twist the tube open. Both packets have to be agitated ( a bit like a bottle of nail varnish before painting your nails) to ensure the lubricant is activated. It sounds complicated but it really isn’t. I chose the smallest size available as anything larger just made my eyes water. 

Please be aware that the whole of the tube is not inserted! The pink section on the Hydrosil and the green section on the Coloplast are the handles. Just the small tube is inserted and only to the point of when urine starts to flow through the end of the handle.

I just want to state for the record I am not being paid to mention or endorse either brand of catheter and I am not receiving payment of any kind. They just happen to be the catheters that my local health authority offers.

Once the nurse had run through the basics of catheter insertion it was my chance to have a go. I trundled off to the bathroom alone and full of dread. I really wanted to get this first time. A friend had been through the same thing recently and had cracked it in 10 minutes. I thought to myself “how hard can this be?” and then spent the next 5 minutes swearing and failing miserably. No matter how hard I tried I couldn’t get the bloody thing to go in. I was in the right place, I just couldn’t insert it. I had chosen the Hydrosil  to try first and I realise now that this was probably a mistake (for me others maybe more successful with it using it for a first attempt). With the tube being silicone when it came up against any resistance it simply buckled under any pressure. Had I chosen the Coloplast with the more rigid tube I may have had more luck.

For a few minutes I sat on the toilet, trousers around my ankles summoning up the courage to call the nurse for assistance. I plucked up the courage and she came to my aid. This was where the hilarity really began. My bathroom is uber small and has no natural light. We had to engage in a session of hunt the urethra with the nurse on her knees in front of me using a mirror to get more light on the area. At this point giggling my head off I offered her the head torch we keep in the car for emergencies. We had to stop for a moment to compose ourselves. She confirmed that I was in the correct location, so at least I had got that right. However she was going to have a go inserting it….oh joy!

It really bloody hurt, she also struggled to get the catheter past the opening of my urethra. I was desperately trying not to climb on top of the toilet cistern, with the normal human reaction of getting away from the thing causing pain. Eventually it was placed but it caught the nurse out, my urine drained all over my knickers, jeans and bath mat. Again I couldn’t stop laughing, which I think was to the relief of the nurse who had just covered me in my own urine. I informed her that I had debated wearing socks that day just in case this very thing happened. With no bag on the end of the catheter urine runs freely through the tube. If you don’t have the end placed over the toilet bowl accidents will happen, even to consummate professionals.

If I thought it was painful on the way in, nothing could prepare me for the agony of its removal. I kept begging her to stop as it felt like my insides were being torn out with it. My sister had warned me that catheters could feel like you were shoving a cheese grater up your urethra. I had laughed at the time, I wasn’t laughing now. I had tears in my eyes as it was eventually removed. I thought to myself if it is going to feel like this every time I use one I don’t think I can do this. I know I can be a drama queen but when it comes to pain I am pretty hardcore. This was extremely uncomfortable.

The nurse left me with 36 catheters to practice with, in a few days she would ring me to see how I had got on. She wanted me to get used to doing the procedure alone and to find out which type of catheter I preferred. Ordering the products is simple, the nurse sets up your account, then every month the company rings you to see what you need. They then contact your GP’s surgery who write the prescription, fax it back to the company who then send out your supply via a courier. I did have the option that the prescription could be sent to my local pharmacy but I like to save my husband from the embarrassment of picking up catheters. I opted for both the Hydrosil and the Coloplast. I found the Hydrosil more comfortable to use but some days I really struggle to insert them and that is when the rigid tube of the Coloplast comes in handy.

 I tried to self catheterise later on in the day of the nurses visit, four attempts were unsuccessful, I was at the point where I believed I was never going to get this right. The fifth and final attempt of the day (I had decided as it was getting frustrating, with my confidence at an all time low) I did it. I was so proud of myself that I had done this that I wanted to shout it from the roof tops. It was much less painful doing it under my own steam. I think when the nurse did it I was just so stressed and tense that this had caused some of the pain. I had a new-found confidence that I could indeed do this. It was going to take me some time to master it and I was under no illusion that I would get it right every time but I now knew it was not  mission impossible.

I tried again on Sunday managing to do it twice and on both occasions it went in first time. I was on a roll however the pain was back and there was blood on the tip of the catheter. This was nothing to be alarmed about all the literature and the nurse had warned me there maybe some bleeding when first doing this. The tissue in this area is very delicate. The urethra would eventually toughen up and the bleeding would stop. It’s still hard not to react to the sight of blood no matter how minute the amount. It was just a smear of blood on the tip of the catheter.

Monday I managed to do it again and when the nurse rang she was pleased that I was progressing well. She reminded me that there would be times that I would find it difficult. When I was struggling she told me to step away from the situation, go and have a cup of tea and try again later. She was so right that there would be times that I would struggle. After several successful attempts Tuesday was full of disasters. I went through six catheters attempting to practice my new skill. Again I got to the point where I thought I would never get it right again. With perseverance I was successful later on in the day. It is easy to see how you could become disheartened by the whole process.

I am lucky in the fact I don’t have to do this every time I need to urinate. I will only need to do this a couple of times a week. It is still sore, but bearable and more than one attempt a day leaves me with bladder spasms, which are easily controlled with muscle relaxants. I still find it quite daunting every time I attempt to self catheterise. I have found the best approach is to be as relaxed as possible. If I am tense at all I can’t do it. I am worried that I will have a bout of acute urinary retention before I have mastered this completely and under pressure I will not be able to do it. So I must practice, practice, practice so that if I do need to do it for that reason I can. 

I don’t want to put anybody off doing this, I am only reporting my own experience. If you need to learn how to do this there is nothing to be frightened of and the upside is it means no trips to the hospital when you can’t urinate.

This post is dedicated to my sister and to my friend KH. Thank you for sharing your experiences with me.