Minnie

Brief Outline:

Minnie’s bladder problems include urgency, leaking, and retention of urine, and she also self-catheterises. She had been having Botox (botulinum toxin) injections in her bladder for the last 10 years; however, these stopped during the Covid-19 pandemic.

Background:

Conditions: urinary incontinence, urinary urgency, urinary retention

More about me...

Minnie has always had bladder problems. She believes it is because she was born premature and her nervous system was not fully developed, but she has also noticed her bladder problems worsen with age. Minnie experiences urgency (needing to dash to a toilet quickly to wee), leaking, and retention (being unable to fully empty the bladder and feeling there is still urine left inside). Minnie tried tablets and patches to help, but neither worked. She has been having Botox (botulinum toxin) injections in her bladder for the last 10 years. She started self-catheterising after a Botox treatment, when she found she could not release the urine. At the time, Minnie did not know that this was a risk of the treatment.

Problems with the hospital’s equipment and the Covid-19 pandemic have left Minnie without a bladder Botox treatment for over a year. Her bladder problems have become worse, and she received one order of incontinence pads on prescription. However, because she was at home shielding and always close to a toilet, she didn’t order more pads and was automatically taken off the list. It has been a struggle to get back on the list and she was asked to complete lots of paperwork – it was full of medical jargon and required her to precisely measure her urine output herself. Minnie is frustrated and doesn’t understand why this information about her need for the incontinence pads can’t be taken from her medical records. She thinks that services like these should be more joined up.

Although Minnie is appreciative of the NHS and recognises that healthcare professionals are stretched, the last few months in particular have left her feeling very tired and fed up. She hopes she will be offered an appointment for a bladder Botox treatment soon. Minnie has not heard anything yet from her assessment for incontinence pads and has had no pads since the only order sent in June/July 2020. Her advice to others affected with bladder problems are to be persistent with healthcare professionals and services: “keep talking to your GP until they listen. …And if they don’t, change your GP”.

Minnie sometimes feels that she hasn’t fully emptied her bladder and she finds that going for a wee can be very “stop start”. At other times, urine leaks out unintentionally.

And even if it’s a small amount you still have that feeling, well I do anyway [laughs]. That you haven’t been properly. I mean when I first noticed this some years ago, I’d go to the loo and you’d go and then nothing happened, but you knew it hadn’t stopped. So, you had to wait a bit longer and you’d go again. And you’d sit on the loo for ages, stop start, stop start, stop start. And when I went there they said, “Oh yes, this is part and parcel of the problem.” And that’s a little bit what happens now. I get this urge I’ve got to go quickly, and sometimes it dribbles down my legs. Sometimes I get there in time.

 

Minnie had to measure her urine input and output in order to complete paperwork for incontinence pads. She found the process challenging, and it left her feeling “very, very tired and very, very down”.

I later spent three days collecting all the data they wanted, blah blah blah, filling in forms they wanted. There are problems with that because they’ve used medical jargon that I certainly don’t understand it all, but looked up what I needed. Problems with the BMI. I did check with a friend of certain, age, who didn’t do algebra, so they don’t know what x2 relates to in the BMI equation. I looked it up, there’s also a different system that the Australians use, to what the British use. And I grew up with feet and inches, and pounds, ounces and stones. So, I did do a conversion but I would say not everybody of my age would be able to do that, or have conversion tables for reference. They might not have the equipment. Neither did I have a very clear measuring cylinder, so you could work off the cubic centimetres or millilitres or whatever you want to do it in. I had to make do with some plastic things I’d got and it was very, very difficult to read off the numbers. So instead of having to get up and nip to the bathroom three or four times at night, and then nipping back to bed, I went through all this data gathering for these days and nights. And it’s left me very, very tired and very, very down.
 

 

Minnie worked through a series of treatment options for urinary incontinence in the order recommended by her doctors.

I mean they suggested that we started with the pills, which I did, and it didn’t make any difference. We then went onto the patches, and I did what was necessary for that, and that didn’t make any difference. And then, as I said, the last thing was that this kind doctor knew of the Botox clinic in [hospital] and arranged for me to go there. And they did all the tests and decided what was necessary for it. And did that, and I have been grateful ever since.

 

Minnie was frustrated that the healthcare services which do her Botox bladder injections and the social care services which supply incontinence pads were not communicating with each other, leaving her “stuck” when symptoms worsened.

And what I don’t understand is-, what I did learn in this process was it’s a different Trust to the Botox hospital Trust, they all seem to run in different little pockets, or little autonomous groups. ‘Cos I couldn’t understand why the people who wanted this information couldn’t go directly to the Botox clinic, and get all the information of why they gave me that for all those years anyway. Nor could I understand why-, because it’s both ends of a medical problem, I get catheters because I can’t release all the urine, and this helps me that way, and at the other end because I can’t stop releasing the urine, because no Botox operations were being done due to Covid-19. I can’t get a preventative problem for that. And I, I’m, I just don’t understand it.
 
And it also means that when the lockdown is unlocked, I’m not going to be able to go anywhere without protection. And it’s going to be worse than being locked down because until I can get my Botox again, I’m stuck. Really stuck.