Are you sitting comfortably?
I’ve been on the loo or waahing my hands & nether bits all frigate-in afternoon. I was asleep until noon, from a very disturbed night, getting to sleep by 6 ish a.m.
Tuesday I woke at noon but got prepared as best as poss with a bit of a break at 4pm -to 6pm then 10th visit to loo again! I’m in bits at the mess & excruciating spasms.
I understand pain, had lots of it since 1979, docs thought it sciatica then. I’ve given birth twice, naturally and not one scream! So I know I can tolerate pain. Except Neuro/nerve pain.
I refuse to allow Mr C to help my personal hygiene. He barely stops fetching & carrying for me. Mr C preps & cooks all meals, shops, walks our Spaniel 3 times each day, This a.m he went to the pharmacy for his own meds and then had to return at 6.15p.m for my new Vesicare script (bladder tab to replace incorrect script of Buscopan). I made calls for more SPC equipment. It’s hard for me to balance, find the SPC site below belly button, (lifting excess belly and trying to see past the matronly bra. Constant washing hands to scrupulous hygiene. Then change clothes, attempt to leave the bathroom, only to quickly return to the loo, gently clean a raw bum & wash my hands yet again.
Too many docs & nurses, surgery, hospital & district all have differing opinions of what has gone well, why I’m still in this state of bladder spasms & excruciating pain, way beyond the discomfort the professionals describe as normal!
I don’t usually doubt our wonderful NHS but I’m beginning to think they don’t have time to listen & giving quick answers . I speak relatively clearly & articulate, but this seems to give the listener the impression I’m totally fab at cognition & fully comprehend their dismissive outlook! I am far from that, I can’t concentrate, I forget any explanation unless it’s in very lengthy, explanatory terms. No-one ever asks if I’ve understood their quick answers or reiterates the main points.
Since the SPC, it really feels as if I have a large painful lump in my narrow urethra, yet I bypass urune every day as well as well as using the collection bag.
My life has changed dramatically since the op. I’ve been almost housebound since Feb. I’m starting to wish I hadn’t had the SPC, just continued with peeing myself using Always Incontinence Pants.
I feel useless & no asset in my relationship with Mr C. I don’t & can’t do much at all and if the only response by the specialiss is “this can happen”, “to be expected” or “it’s part of the risks, not always successful for some people”.
Mr C is climbing the walls with frustration that he can’t fix this. He is relying on Consultants "being paid a fortune, wearing Hugo Boss suits to pass the buck in a 30 minute assessment, seemingly unconcerned in fixing my problem. Mr C used to be an engineer who sorted urgent repairs to customers & businesses, stamping their feet because their electral appliance from T.V to Satellite was faulty. They couldn’t use the equipment which they relied on. Mr C fixed the problem quickly and all was well. He doesn’t understand how the SPC was intended to ease incontinence, when it appears to him that I’m far worse post op. Physical problems have kept me indoors for months, in great pain that seems to get worse, me clutching my stomach & yelling at the immense Neuro pain.
I’ve had enough and think the Urologist will be told, in no uncertain terms, of my problems, concerns and being fobbed off.
I’m SO sorry for writing so much, when there are so many with similar or worse symptoms & pain. I just had to get all this off my chest before I see the Urologist at 10.15. Patient transport could arrive at 8.30 so I’d better go to bed & try to sleep 6 hours.
Lots of love to you if you’ve managed to read until the end. Not looking for sympathy, just letting off steam.