To be fed up with health issues (catheters)

[blameitonmymjuice]

Basically, have had bladder problems for about ten years if not longer.. diagnosed in 2011 with a stricture (narrowing) in my urethra as well as a chronic infection .... I got urodynamics in 2018 which came back as saying bladder is atonic , doesn’t really contract well at all, and have pelvic floor dysfunction so the muscle doesn’t relax when it should.

I’ve had about eight indwelling catheters since 2012 - mainly in the last two years - and since 2017 have been self catheterising. I was told in May 2017 I needed urgent bladder surgery, cystoscope etc (hydrodistension, dilitation, installation of some sort of medicine). Still waiting now - hospital said they’re trying to do it ASAP but probably be another few months... I’m now using eight catheters on the worst days, sore, risking UTIs etc. Catheter size has had to drop down as it’s even narrower (now a ch10 for those in the know, was a Ch12-14) .

I’ve been given samples of posh new catheters from supplier - more convenient , less painful, easier to use - GP has just refused to prescribe them as local health board hasn’t approved them . I need special permission from urology nurses - who have also got a very long waiting list. I’m dyspraxic so realistically you’d hope anything that’s less complex they’ll just give me (current ones need to be snapped open, twisted, and clicked and then clicked back together after use) .

I’m fed up with the whole thing, it’s messy, sore and just uncomfortable and embarrassing (I have to share bathrooms and there’s no way of disposing discreetly, family always ask why I have to take a bag to bathroom when visiting etc, or why I have to carry a larger handbag, then ask hundreds of questions about catheters) ... plus the damn things leak after use so have to always find a disabled loo with a bin next to it .. I worry then that I don’t actually look disabled as such . I’m staying at my aunts next week and physically dreading using the toilet as she doesn’t have a bathroom bin, she has previously said just use the kitchen bin !!

I’m just feeling a bit miffed and worried and tired of it all :-( I’m not at terms with the fact that they said a lot of this is probably not really ever going to get much better either :-(

Probably nort a lot anyone can offer, just wanted to rant a bit . I remember posting on here when I was in acute retention a few times a couple of years ago (one memorable night having to get the bus from my mums!) and there were some wonderful posters back then !!

Oh goodness, you are going through a rough time 💐. My bladder went into retention a few years ago after I gave birth. It only lasted for 5 months though, so it was nothing like you have gone through. So sorry you are having to cope with all this.

I have similar problems and it's a pain and I sympathise
Quick tip.
Carry a small but waterproof lined makeup bag. And nappy sacs. Or dog poo bags. I think you can get black dog poo bags so no one can see the contents. That way if you are somewhere where there is no bin that you feel comfortable using you can put the catheter in the bag and put it in the make up bag until you can discreetly throw it away somewhere.

As to using the disabled loos. You have a diablility. Not all disabilities are visible. If anyone challenges you remind them of that.
If you don't feel comfortable doing so the above bag method will work for disposal. But I often feel the normal toilets are to cramped to be able to go. So i usuallu use the disabled toilet. Ive only been asked why once in about 10 years.

thank you . Just miserable over it all just now ! Supplier has just delivered me a huge parcel of ‘complimentary items’ including a mirror, bags, wipes, sanitizer etc ... they’re black bags so just as you suggested !

I’m actually not 100% sure if I’ve given myself a bit of a kidney infection as I’m feeling rough - aching in my tummy and flank pain and exhausted . Away to get back to bed for an hour or two I think .

Hello, not a solution but maybe a help: have u tried salt water wash once to twice a day? Just a jug of salty water, pour between legs whilst in a bath tub or over the toilet? Just to reduce any bacteria. Also have u a good moisturizer for your bits? Try dermol or similar. Again to reduce bacteria and soreness. Try to avoid any other products down in that area, was with the moisturizer! Trial and error, just to improve comfort x

YANBU, I couldn't even begin to imagine what you're going through, but just know people are here, listening, and sympathising with you. It's absolutely normal that you would feel fed up, upset, or down.

I hope you are able to take some time for yourself and do something/treat yourself to something you love and enjoy, something that makes you happy.

Here's a hug if you like :)

Also are you able to apply sudocreme before catheter insertion? Not sure if that’s allowed, again thinking of reduced discomfort, UTI risk.

Hug is lovely thank you 😊 you can never get enough of them !

Have tried sudocrem etc . I’ve got local anaesthetic gel but a bit wary of using it as it stings for a while after . I’ve managed to put a catheter in at about 8ish and another half an hour ago ... saw a GP who said highly unlikely anything is wrong and just keep going . Did give me nitrofurantoin just in case . No analgesia though .... am currently trying to settle for the night unsuccessfully .

I’ve been offered to stay next weekend at my aunty’s but I’m very agoraphobic so a bit scared of going down . Two hours on the train . I’ve paid for tickets but not sure if I want to cancel them or not .

Thinking about moisturiser , I have used vagisil before ... the gel ‘hydrate’ one .. expensive but I might have a look for that in the shop tomorrow . Hopefully something helps .

Do you have a direct line for the urology nurses? When I had to self catheterise I was given a direct line, and if I was to have any problems or queries I could phone them directly without having to have an appointment. I wonder if they would be able to arrange the change in catheter for you

I can't be of any help but I just wanted to say how shit this sounds and to send a big cyber hug

My goodness, I hope this doesn't sound patronising but I think you're doing bloody amazing to have been dealing with all this for so long. That's an awful lot for anybody to cope with, no wonder you're feeling a bit rubbish about it.

Another one offering a hug if you'd like it.

Have your medical team discussed something like a Mitrofanoff? My son had similar issues and this has been successful for us. It's not an easy option as it involves surgery but long term maybe good for you?

My knowledge of catheters is very basic, but would you be a candidate for a suprapubic? I know they’re not keen on doing them but you’ve had an awful lot of problems over an awful lot of years relating to insertion/reinsertion which a suprapubic catheter would eliminate.

They have mentioned an SPC yeah . I think if the dilation fails again that’s probably the next step which does worry me , I’m on fb groups for girls with catheters and they all seem to be in pain all the time ... and I know it’s daft but I’d worry about smells too . I don’t think I’d miss self catheterising at all .. I am quite fat though so I assume I’d need to lose a lot of weight before they can do that . I suppose given they’re saying it would be lifelong that it’s probabky the next logical step . Can you still carry a baby with a suprapubic I wonder (not that I’m planning on falling pregnant any time soon , just wondering !!)

It’s trying to get family support too ... I’m my mum’s main carer and I don’t think she gets it . No other family really know , or if they do they don’t understand .

Thank you so much for the hugs though [Flowers], not patronising at all !

That's appalling, I've got many issues but yours isn't one of them and I don't know how I'd cope.

You're amazing to go through this and for so long, and still be here, and talking about it.

I can only remember one catheter from when I had an epidural. So I've nothing useful to say, I just want to tell you you're brilliant and I'm sorry you're not receiving the treatment you need. And I can't believe they won't give you the catheters which work better for you.

I've been thinking about you throughout the day
I'm wondering if your caths are too complicated?
I've been doing this for over 10 years since I was 25, single no kids (now married 1 child only mentioning cause mumsnet)
I prefer the spedicath straight fr10 - like you I'm a child's size
It's a straight catheter no clicking or assembling just in and out so to speak. About the size of a ruler for your handbag. I like them as they are no fuss and easy enough to get out of the packet.

I understand that you feel frustrated and embarrassed by what you are going through now but I would urge you to keep trying. It does get better. There are many more catheters to try and the resorces are out there they are just so very hard to find esp when you feel so down. But it does get easier I promise xo

My child has had a suprapubic and is awaiting a mitranoff so I have a bit of knowledge of these too. Pee Problems not related

I am hoping for myself to cope with catheritisation as long as possible.