I’m sick of it now . First big episode of urine retention at age 21 in 2012 although hospital thought I’d had it chronic for years . Repeated episodes over 5 years . Tests showed structural problems with bladder, urethra and very little nerve function .
Apparently there’s no reason for it, diagnosis, cure or treatment - and as urologist said, being under 30 and female it’s highly unusual, likely lifelong . Only sort of clue is that my cousin is exactly the same; and now has a suprapubic catheter with a view to a more permanent solution eventually . GP muttered a bit about spinal nerve stimulation but said unlikely NHS will do that .
Hospital barely ever see me, usually once every two or three years, and GP says she doesn’t have the knowledge to help . I have a specialist nurse but I’ve seen her once in four years for the ten minutes of self catheter training, and can’t self refer .
GP said to self catheterise as needed - but didn’t have an answer as to when that is . I very rarely if ever need to pee - when I do it’s very painful . So don’t know when I’m needing to cath .
Am sore tonight across bladder, struggling to pee, failed to get a catheter in and just fed up with it all now . I have managed to pass a bit so don’t need to get help or anything but just so down about it . GP surgery don’t do much about it, just say persevere ... but I’m not sure if I can . I keep thinking I should ask for an appointment with the hospital again, but worried they’ll think I’m making an unnecessary fuss .