Last reply 5 years ago
Bladder issues vent! Ideas???

Sorry in advance, this is a bit of a rant, but no one I talk to about this seems to ‘get it’ so I thought I’d try here. Any ideas, similar experiences appreciated – would love to know I’m not alone! – and if anyone has some ideas to help that would be great!!!
So basically my bladder is giving me the crappers!
Can’t decide weather to control itself (too well, retention) or not at all (ops! I think I sat in a puddle! Fancy that!)
It was one of my first symptoms in Jan’12 (pre Dx) (with walking funny) and then disappeared nicely when my ‘CIS’ resolved. Reappeared in Aug’12 with my second ‘relapse’ and has stayed since. Got worse with relapse #3 (Nov’12). Everything else from relapse 3 is improved (was in a wheelchair named Jaws) now walking drunk, so much better, relatively, but MY BLOODY BLADDER!!!!
Up 6x last night (no joke, pen in bathroom) despite oxybutynin, which I started 2months ago (initially symptoms better, now worsening again, especially since last Tuesday). I tried going off the oxybutynin, just to see what I am really like: much worse!
During the day I am either running to the toilet all the time, or incontinent all together. I am 27! Know this doesn’t matter, but ‘being incontinent’ was not on my pre-30 to do list (neither was MS actually).
Hate hate hate it.
So so so much.
Am pulling my hair out and so over it!
And not helped that I am constantly tired from being up all night like a guy with a prostrate issue, I know my coping mechanisms are down from fatigue. And I have an outside loo, which doesn’t help.
Saw my neurologist a month ago, he started throwing around the word ‘catheter’ which I balked at. Have only been diagnosed 5months. Bit early for that.
Though have been waddling around in incontinence pads for 6months now… So attractive…
But I am finding it exhausting physically, draining emotionally, and my self image is down the toilet (or on the chair, bus, car, shoes… Actually, I don’t know where my self image is anymore)
What do other people out there do??

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5 years ago

What I did was get referred to the hospital’s continence clinic, which although overseen by a consultant is run by nurses who have far more time to deal with you than the neuro in his clinic. The first thing they did was test me and did ultrasound on my bladder to see what was going on. I had retention and urgency. It was so reassuring to get it all discussed, explained and put in context. They sorted it through tablets and also a little buzzer device which I had to hold over the bladder and which gives a message to the brain to ‘go’. I was told, however that if it didn’t resolve I would need to self-catheterise, which sent me ballistic. The nurse said to me that if she had a pound coin for every lady she’d taught to catheterise (who’d been similarly terrified but who found it drop dead easy) she’d be a rich woman. The point is: it needs diagnosing, treating and then monitoring – not just a few words from your neuro. If your neuro clinic doesn’t have a continence clinic, there will be one elsewhere in the hospital. Incidentally, if you read the ms research blog, Prof G says that oxybutinin is no longer the drug of choice because it can give you cognition problems. There are apparently newer alternatives that don’t have this side effect. Hope this helps and lots of luck with this. xx

5 years ago

Jas, I now know exactly where you’re coming from!
There are other drugs available, e.g. Detrusitol, Vesicare and Toviaz. I’ve tried them all and they haven’t really helped.
Yes, I have urgency and frequency problems. I’ve also been self-catheterising for more years than I can care to remember.
Self-catheterising never sounds like a nice idea, but it does allow you to completely empty the bladder, which overcomes the frequency problem for a few hours.
Don’t discount the concept, but do get onto Urology/continence,as Cameron suggested, just to get checked out.

5 years ago

The continence nurse I seen was amazing, I spent days in agony as I wasn’t able to go, it’s not very nice having to learn how to catheterise at 26 but needs to be done, it’s a lot easier when you get the hang if it, I don’t even think about now, I have asked about Meds that might help me, was told its only for frequency. hope you all the best with this

5 years ago

Hi Jas,

Ive been where you are, shall I re-word that as we are talking about bladders Ha!
I know it’s not for everyone but I can’t recommend LDN enough, it sorted my bladder out,
think about it maybe, there is nothing worse than having that full bladder feeling all the time, drove me mad especially when there was not a toilet nearby, and running to the loo is not an option when you cant even walk too well !
Have friend requested you, message me and we can talk LDN if your’e interested Loulou x

5 years ago

Hi Jas, I understand where you are coming from, I get it and I hate hate hate it too! I’ve had bladder issues since March 2011 of incont, urgency and retention.

I have tried numerous medications and alternative therapies and found that Vesicare was the most effective with limited side effects. I had hoped to try PTNS (Percutaneous tibial nerve stimulation) as some people have had good results with it, but my hospital stopped offering it.

I’m not currently taking any medication as last month I had Botox injections in my bladder. Initially I was really reluctant to have this procedure due to the catheterisation issue, which made me freak out, as there is a chance that it works too well and the only option is to self cath. Since the botox I’ve not taken any medication for this and the frequency and urgency is massively decreased (although not gone). I’m also less anxious / nervous, although I still need to know where the toilets are and I’m still conscious about what liquids I consume. I had the lowest dose of botox and it will last from 3 to 9 months and I will definitely have it done again when it wears off. I have had to self cath a few times and I’m beginning to cope with it better, although it still freaks me out!

Craniosacral therapy has been quite helpful too, although no magic fix, as I’d read it had positive effects, the link shows the research:

Like the others have said, see the continence / urology team if you can, all the best with it.

5 years ago

Hello everyone!
Thank you for you encouraging posts- lovely to know it is not just me!
Shout have mentioned that I have seen a continence nurse, had ultrasounds, sat on a ‘throne’ which measured flow etc. She did talk about other meds, but not very hopefully (though to be honest there are not too many drugs approved for MS bladder issues in Aust- dont know why, grrr) and also the ‘C word’: all very fascinating and am now waiting appoint with urologist/neurology woman, potentially months away.
Was interested to here that oxybutynin is not the drug of choice, and about the cognitive stuff. I’m going to have to look this up further. I feel like the fog in my brain is only just lifting (3 1/2 months into Tysabri) – I don’t want to go backwards!!
Have looked up a few of the meds mentioned, vesicare, LDN not covered in Australia through PBS/Medicare, which means paying full price. I can’t really afford that right now- spent months not working last year, and now only working 2-3 days a week, so money tight. Sounds rediculous I know – health option limited through money, but not sure how to get around it.
Sounds like I will just need to wait and see the urology/neurology dr, she might be able to She more light on the whole thing. Just so over it and pretty damn tired of it,
Thank you all for your encouragement, both about other non-catheter options, and saying the Catheter is not that big a deal. Do be honest, got to a point last night where I really couldn’t care anyway.
Just so over it 🙁

5 years ago

Look at the ms research pages – entries on June 9th and June 23rd 2012 are the ones I was meaning.

5 years ago

@cameron, are there any links to the above two stories? Thanks

5 years ago

Yes, the entries are by Prof G, talking about oxybutinin and explaining why it is no longer the drug of choice for MS bladder issues (referring to @jasfromtas‘s comments).

5 years ago

Where do I find the posts? Have looked- must be going blind! 🙁
Tried the search too but no avail,
Cheers Jas

5 years ago

@cameron, I can’t seem to find the articles either. Any hints that you could let us have? Thanks

5 years ago

Sorry – trying to do this too quickly. If you go on the ms research blog and type in to the search ‘oxybutinin effect on cognition’ you’ll get the two articles. One was 2011, one was July, I think. Apologies!

5 years ago

5 years ago

Hi Jas

I could relate to every single word of your post, my bladder is one of the worst things (to me it’s worse than being a wheelchair user). I ISC (intermittent self catheterised) for a while, and I was 30 at the time (37 now). It’s so mortifying having accidents all over the place, and I found it had a massive impact on my fatigue level because I was constantly having to get washed and changed.

Has no-one mentioned Botox to you? If you’ve never heard of it in relation to your bladder (it’s not to sort out your crows feet, although I did ask them to put a bit in when they were doing my bladder, but they said no – boo!).

Basically you have a general anaesthetic, they lay you down and with no regard for grace or your dignity (thank God you’re asleep), they put your legs akimbo and up in stirrups, then they pass a needle and camera into your urethra and down into your bladder. They then randomly inject the Botox into about 15 places in your bladder.

I can honestly say it changed my life, it’s amazing! I stopped having accidents and was actually able to make it to the toilet on time. There is a proviso that you are able to ISC just in case you find yourself retaining.

You can self refer to a continence nurse you know? If you’re unsure then ask your doctor to refer you.

I hope that you are able to find some help soon.

5 years ago

Hmm, Botox is an option, although my access route to the bladder is a tad more complicated! 😯

5 years ago

hmm it makes me wince to think about it, and i’m a woman!

BTW is there a list of how you do all the emoticons somewhere?

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