Anyone with any experience of catheters?

[towanttositandcry]

I'm struggling a lot. Been told several times over the last few years that I need to use catheters as my bladder is 'lazy', doesnt empty well or give me an urge to go. Had tests that show I've got residual volume of 700ml or so .

Hospital can't agree on a diagnosis except to say its not fixable and will need lifelong treatment and monitoring.

Was given 10 minutes of training in 2017, and told to go home and get on wit it . Another 20 minutes of training last summer, during which the nurse said I'd get on best if I squatted over a mirror and tried to pee into a bucket .

I'm desperately trying to do the catheterising but am terrified of it, perhaps stupidly - its agony, I end up in pain for 24 hours each time, my anatomy means I'm going in blind (cannot visualise urethra - hospital usually drag several different doctors/nurses in to cath me lying down so God knows how they expect me to cope alone) . I've also got vaginismus so find as soon as I try things sort of shut down - and can be sat for a while trying to relax iyswim .

Hospital said if I don't comply I'm looking at stones, renal failure, possible serious illness - or a permanent leg bag - which frightens me more than what things are like just now .

I'm not sure what to do or how to make it easier . GP says she has no experience or advice, hospital will only fund one appt a year for review and said only charities are for eg spinal cord injury, MS, Parkinson's, who can't help as I've not got a condition like that .

Tried to cath last night, catheter came out covered in blood so ended up with OOH GP phoning - think I've burst a blood vessel with poor technique . No treatment, just to watch and wait for infection . Horrendously sore this afternoon .

I'm shattered and desperately unhappy and clueless about what to do next . GP is ringing this week, but her answer is always that they don't get trained in bladder disorders and it's not appropriate for her to advise or help .

Where do I go next?

It sounds like a horrendous struggle for u.
Tbh I wouldn’t like the idea of intermittent catheterisation either so please don’t blame yourself. It sounds as though you have some trauma from previous hospital insertions. Which is understandable if they have been difficult insertions.
What is putting you off a long term catheter? Surely it would be better than the stress of intermittent catheterisation?

Could they put you in touch with a patient support group? There must be something; there are several conditions that could potentially require self catheterisation.

I suppose they have suggested using a mirror, checked that you have the correct size, lubricating gel etc? I think there is a local anaesthetic gel that is used in hospital.

I am so sorry. It sounds very distressing.

I'd be ringing your Urinary consultant's medical secretary at 9 am tomorrow morning. There must be something they can do or put you in touch/refer you to the district nursing team who should be able to help.
There must be loads of people who couldn't manage that technique on themselves, including those with learning difficulties; there must be someone who can help.

I have been using catheters since I was 13, but haven't had this problem. I don't use a mirror to see it, just sort of find the right hole through touch. I don't have the mobility to hold a mirror and a catheter and get it in the right place at the same time! Could the catheters be too big? I use children's catheters because found the wider ones uncomfortable. Might be worth asking for narrower ones? Also you can get a sort of lubrication to use with them, that is from the GP too. I think it is called instillagel. That also contains a mild local anaesthetic if I remember correctly. There are a wide range of catheters, and different ones suit different people.

You can get something like instilagel to numb and lubricate the area. But unfortunately it is a case of just practicing. It shouldn’t require force to get it in and you’ll know you’re in the correct place due to the flow of urine.
There are long term catheters such as vaginal and suprapubic which may be better for you to manage. They come with their own risks such as infection and may require changes to your lifestyle, however you can get shorter bags that sit on your thigh so harder to notice and I believe (although not seen) something likes stoppers instead of bags if your bladder will hold the urine and not bypass the catheter.

I'm sorry you're having so much difficulty with the catheters - it does sound like self catheterisation is not a great solution for you though.

700ml is a very large residual. Have you considered an indwelling catheter? You don't have to wear a bag, you can have them with a valve on the end which you open to empty your bladder every few hours. There is a higher infection risk with indwelling catheters though.

Do you have a Community Bladder and Bowel team your GP can refer to? They are so knowledgeable they would be able to discuss all the options with you.

Hope you find something that works for you.

Also, B&B team or District Nurses may also be able to support you with self catheterisation I'd you wanted to continue with that with support. Definitely worth asking GP for onward referral I think.

I think your GP is failing you here massively. You need to be supported, referred and advised.
To leave you in this limbo is totally unacceptable.
1)Ask for an urgent appointment with your consultant. 2) And a referral to some other dept to get to the bottom of what is actually going on here. 3)Plus support from District nurse in the meantime.

Thanks all so so much . Didn’t expect so many replies, a bit overwhelmed !

I think with a long term indwelling I’m just scared, I’ve had them several times in hospital and at home and just found them painful (GP wont prescribe pain relief beyond basic paracetomal), leaked all the time, struggled with walking etc . Used to have accidents constantly . Was also told by occupational health I wasn’t allowed to work in patient facing role but that maybe depends on department/job .

RE catheter size, it’s a 14 I’ve got, but have also got boxes of 8 and 10 . I think probably the 14 was too big . I’m not sure what I did last night, first catheter I placed there was no flow at all even when I advanced it quite a bit - second time I did get flow but then on removal lots of blood which was a shock . OOH GP said she wondered if I’d created a false passage but don’t think so - I’ve peed several times since and painful but not so much blood as last night .

GP is very unhelpful yes, just says she doesn’t know how to help . Hospital are marginally better however I’ve had these problems since 2010 - and seen a consultant three times in that period, it’s usually a reg or a nurse that rings or sees me in clinic (and even then, I’ve only seen them four or five times).

They said on phone on Friday they want to do a third cystoscopy and urethral dilation and hydrodistention but said they’d rather do it awake - said it’s fifteen minutes of pain then over . Less than convinced about that . I’ve had both twice before .

I’ve got instillagel but they’d always advised to avoid using it - will ask again why I shouldn’t, as it might help - GP did say she wouldn’t try without it, was hospital who said avoid if poss. They’ve always been funny about making sure I can see everything but it’s nigh on impossible without acrobatics . Urethra opens onto vagina wall and isn’t really visible at all, I can find it by touch but not at all by looking .

GP has always said if I had a diagnosis I’d be referred off to a team eg Parkinson’s nurse, or spinal team, but because they’ve just sort of said it’s ‘unknown cause’ so no ones taking it on .

I’ll ask again about district nursing and B/B team, see what GP says - I really don’t want to end up in same position as last night again .

OP how are you finding things now?