Bladder Trouble

[Scarlett]

Do you recognise these symptoms? I need a wee, so I sit down and do the wee. I wait a minute and can squeeze some more out. I wait another minute and can squeeze yet more out. The first big wee I did, I was certain I had got it all out. So when I eventually leave the loo, I still feel kind of like I could go again. I'm 50 and have EDS. I wondered if this was familiar to anyone?

[ummmm]

Any pain?

[Scarlett]

No pain. I have had cystitis which I believe is linked to the pool of urine that is left hanging around in the bladder. But at the moment, no cystitis, just this inability to empty on first go.

[Bazile]

I was going to suggest something , but I notice you are female

[Scarlett]

That said, I have had pain in my back/side which could be kidneys, but I've been doing the urine test strips which don't show very much other than the dehydrated one.

[Scarlett]

I also feel a slight 'tightness' in my bladder, like it can't relax properly. I am due for a bladder scan but since I've been shielding I can't easily get to my surgery as it means traveling in a taxi which I am reticent to do.

[bednobs]

due for a bladder scan for what?

[Scarlett]

The one where you drink loads of water and they scan your bladder and then you empty, and they scan again. To see to what extent it’s not emptying.

[bednobs]

so youre being investigated already for this problem?

[Buenchico]

Whatever we write here, this must surely come down to the standard advice of "See a Doctor about it!". (Even if the mighty Sqad is about, he can't physically examine you or carry out any tests).

However, I note from the NHS web page about EDS that sufferers may have
"problems with internal organs, such as mitral valve prolapse or organ prolapse

[or] problems with bladder control (stress incontinence)"
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

I further note (again, from the relevant NHS page) that pelvic organ prolapse can lead to
"problems peeing – such as feeling like your bladder is not emptying fully, needing to go to the toilet more often, or leaking a small amount of pee when you cough, sneeze or exercise"
https://www.nhs.uk/conditions/pelvic-organ-prolapse/

See your GP!

[Scarlett]

Yes I postponed my scan but I think I’ll have to go and bite the bullet as it’s been going on for a while now. Just wondered if anyone else has had similar symptoms.

[Sqad]

I think that you bladder symptoms are associated with your EDS.
You will still need urological investigation.

[Rosie29]

Scarlett have you tried sort of half standing to pass urine ? As if you are trying not to sit on the seat ? Sometimes if there is a bit retained in the bladder this might help.

[Apc2604]

Scarlet I have answered your questions before because I have EDS/Hypermobility spectrum disorder ( they can't make up their minds which) I never have received an acknowledgement from you so gave up. Your problem is quite common actually. Irritable bladder is common for those of the spectrum.

[Scarlett]

Sorry Apc2604, I need to be better at replying. Thank you, I will look at the links between this and EDS, and speak to my speacialist.
Rosie- thanks, I will try that although I have to be careful my knees don't dislocate when I try!

[Scarlett]

Thanks Buenchico- very useful links. Incidentally, it would be so useful if Answerbank had the facility to 'like' a response so that you could see it had been acknowledged. In this day and age you'd think they would have added something to show thanks from the OP!

[bednobs]

you can make a best answer, but that's no good if you want to acknowledge one answer

[Apc2604]

Hi Scarlett,

I was recommended by my HMS/EDS specialist rheumatology at the hospital to join this organisation.

https://www.hypermobility.org/pages/category/hypermobility-spectrum-disorder. It's been very helpful.

I would suggest,with such a complex condition that most people have no idea about, it really is pointless posting questions on here when you can contact the HMSO so easily.

Best of luck with your scan.

[Scarlett]

Thanks Apc2604 - I was wondering if these symptoms perhaps were nothing to do with EDS, and whether anyone out there had experienced them. I try not to assume everything is linked with EDS, although it usually is!

[joko]

I have this issue too, takes ages to force it all out, and when i was about 10 i had a period of struggling not to leak - not sure how or why and it just went, fairly soon, but as EDS affects all our tissues it makes the walls of our organs quite lax and not very good at holding shape and strength etc.
kegels may help with muscle control in general i suppose, but i've not seen a doctor about that issue in particular.
I kind of assumed most people had to do that somewhat?