Mortifying moment…

One of the things that I feel that is a really big issue in MS and is not talked about enough are bladder issues. I know that this is something that also affects people without MS, and again, we do not have the confidence to talk about this whether we have a disability or not.

So I suffer with bladder issues, and I am really lucky that I have an amazing group of MSer friends (and some very close none MSer ones too) so I don’t feel so alone.

I recently had a really embarrassing moment with my bladder and thought that in light of this, I would come online and share some of my experience, and some of the things that I have learned about it since my diagnosis so maybe some of you guys don’t feel so alone, or as mortified as I did if things like this happen to you.

In MS, there are two main types of bladder issue really, storage/urgency and some with emptying. Some people with MS only get one type or the other and some people get both. Like I said before, bladder  issues are super common. I think since I started with MS symptoms when I was 16, I have had mainly had issues with storage and urgency. I always assumed that this was pretty normal to be honest though. As a younger person who didn’t know that they had a disease, I didn’t know what was normal or not, and I thought that everyone suddenly felt the need to go to the loo, and seemed to need the toilet more often than others.

It is definitely only since my diagnosis, and since being an adult that I have realised that there are people out there who maybe only go once or twice in a day (and can hold themselves like camels)

I think one of the things about bladder issues is that we take having a normal one for granted. When you have a working bladder, your bladder gets ore and more full to a point when it sends a signal to your brain that you need a wee. Most people can usually hold on for a pretty good while until they can get to a loo, or they are in a convenient position to use the bathroom. Sadly, with the type of bladder issue that I have, that is just not the case for me.

As I understand it, some of the signals that I have mean that even a small amount of wee inside my bladder mean that my brain tells me that I need the loo. This is becoming quite problematic actually. I have become pretty good at telling myself that I cannot possibly need the loo because it wasn’t long since that I last went. However, recently, I have found it so hard to judge when I do and when I don’t need to go for real!

Also, my bladder has started to spasm which hasn’t really felt like I need the loo… but is really really painful. This issue with both of these together mean that sometimes I literally just cannot seem to hold on to urine that I didn’t even know was in my bladder…

What about the other type?

So, I don’t know as much about the other type. I do know a little because if I take too much of one of the drugs I have (solifenicin) it can cause some retention and this is kind of the same. However, I went and asked a few MSer friends who talked to me about their issue with not being able to go to the loo.

In this type of bladder problem, there are lesions which interrupt the messages which help you empty your bladder. Some of my friends tell me that they can wee but it comes out super slow and they need to sit on the toilet for a long time. They also mentioned that to empty they need to either stand up and sit again (or like I do, lean forward and wait a bit)

I was chatting and I was saying that one of the issues that I have is that I need the loo, and then I need it a short time again after. This is when I haven’t been able to empty fully. Apparently, according to the MS nurses, they say that this ‘residual’ wee can be solved by sitting forward like I do… they also say go and chat to them about wee problems.

Why am I telling you this??

Well – I went into buy a new car and I was in the most glamorous Mini Showroom with a sales assistant, and I literally stood up and wee just came out. So so so mortified. These kind of things have been happening more and more recently.

I thought I would share with you because I disagree that we should be ashamed about these really upsetting things that happen due to MS. I hope that by reaching out and sharing this experience, I will help someone else who has had to go through the same. I am not afraid of sharing that it happened on the way to work and I bought new trousers either… 🙂

Anyway – I have been taking Solifenicin for years and although this has been somewhat helpful, things have clearly gotten worse. I decided that I would go back for some support with my new issues. The MS nurses helped me out with a trial of Mirabegron for a couple of months and then suggested Botox. Definitely not too sure about how they do the Botox??

Anyway – let me know if any of you have had these types of bladder issues, and what you have done about them. I am really interested if you have had Botox, and if you have found Tolteradine Tartrate better than Solifenicin.

Hope you are still enjoying the blogs as well

Over and out

Z x

8 thoughts on “Mortifying moment…

    1. Aw thank you so much for your comment – I have been finding the same thing which is why I started my blog. In the new year I am going to start writing about some research papers and am hoping to do a monthly vlog as well?? Is this something you would be interested in?

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    Hi Zoe, my embarassing moments (ever used a hand-dryer aimed down the inside of your pants?!) got so regular I started wearing incontinence pants. Horridly bulky things but wonderfully reassuring. After a few years my urge incontinence had got so bad I was getting through 6 pairs of them a day. Because mobility is an issue it’d take me ages to change. I’d have to carry spares with me & I’m horrified at my ‘contribution ‘ to landfill 😮 A urologist suggested catheterisation. I’d already tried self-catheterising but with poor dexterity it was a nightmare! I wasn’t sure but then she said “It’d stop you being a slave to the loo.” ” SOLD! ” said I! I opted for suprapubic, a small hole in tum for pipe into bladder, which leaves the vagina etc free as an alternative, if needed, and for…er…other things 😁 My catheter has a tap ‘flip-flo’ so I have 3 options: bladder & flip-flo; leg bag; night bag. I use pretty covers on my bags so wee is not visible. You’ll be glad to know I’ve nearly finished. Lol. Lastly, Botox. I have injected into the bladder wall a every year (people vary) and it takes away that awful urgency and need to constantly go. It also means that you are more likely to fully empty which is so important. I was constantly getting UTIs, which horrendously stopped all 4 limbs from working & took me into hospital so often. I still get the odd UTI but much less often & less severely. So, botox? My opinion is DO IT! 👍

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    1. Thanks so much for your super honest comment and I’m really glad that you felt you could share on here. I’m hoping to have the Botox too… but the ms nurses said they have to follow this protocol they have!! I’m hoping I will be able to come back in a few months and let you all know how this is going.
      Ooooh can you tell me how they do the Botox? Where does it go? Sorry if this is a bit private –
      PM me ?

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      1. Hahaha, I only just realised that these comments go PUBLIC! Oh well, I guess anyone reading will probably benefit from the info and anyone reading for kicks “You are sick individuals, go **** yourselves!” Right, where was I? Oh yes, botox into the bladder. They go into your bladder with a very thin, flexible, thing the the way pee comes out…but with local anaesthetic. It doesn’t really hurt but can give you some odd feelings ~ let’s face it, you don’t usually have that going on in there, do you?! ~ the botox is injected (needle is pushed out of flexible tube) into multiple sites. You sometimes get to see the camera view that the urologist has, that is weird…seeing inside your own bladder! It’s over in just a few minutes. I hope you get a date for it soon. It really does calm the bladder.

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      2. Ha ha sorry you didn’t realise!! That’s actually a little bit funny. If you want to send me a private message, there’s a contact thingy. I’m not an expert with websites (although I’m trying to work on improving this site) and I’m finding that bit a challenge!! I spoke with the ms nurse recently and he said they’d contact urology who’d set up the appt soon – also got info on the self catheterisation thing and that looks a little scary if I’m honest!!!!
        Hubby said he was jealous but I think he was just being kind!! 😀

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  2. I hear you Zoe. I have days when I have to go so many times. It’s really noticable if I am on a plane or in the cinema. I always try to get a seat close to the bathroom. Thanks for sharing

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    1. Thanks Joan – I also notice that I have a fear of going in places when I know there is no toilet. I also try and make sure I’m close to the toilet so I feel safe when I’m in the cinema or plane too. The last time I went to the cinema I was stuck in the middle and I had heart palpitations… 🤭

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