I'm at my wits end I've been to every professional in the last year and still have not been given a proper diagnosed and sent in a blasted merry go round from one dr specialist to another.
The pain is absolutely agonising. It's like peeing shards if glass and the spasms are like labour constructions!!
The slightest bit of urine ignites my pain even more?! Even after going to the toilet the pain and tenderness is still there. With severe pressure on my private parts?!
I'm taking oxycodeine 3 a day. Parecetomol 4X a day and clonazepam 2 in morning and 2 at night. I'm only suppose to take 2 clonazepam but as it's a muscle relaxer and no one is giving me anything in the meantime I SELF dose myself in a controlled way. It helps a bit. Painful but I'm not at the point where I'm screaming in the toilet?!!!!
I can't even ride in a car it's so painful?!!
I'm a wheelchair user and even using this or being listed causes excruciating pain over the bumps and uneven kerbs?!!
I am so annoyed with my health professionals. As a dialysis patient and osteomalacia syffererceuth bad mobility I have told all my kidney doctors dialysis doctors and urologist drs even my GP and they have totally blanked me. Neglected to give my GP permission to prescribe medication and because I was too sick to attend a urologist appointment they struck me if urologist clinic saying I don't need s urologist appointment 😡
I asked to be referred to local hospital but find out they don't have a urologist. The original. UROLOGIST at Kings was already hostile and advised me that I should have my kidneys removed when having transplant. I didn't take kindly to that advise and he was not a kidney fr and felt insulted that he had the audacity to make that kind of decision/remark without consultation with my kidney drs?!!
I have now returned to my GP and asked to be referred to another local hospital Queen Mary/Elizabeth. I just hope I get better results because I have been suffering in silence for too long and it's affecting my dialysis as I have to pee every ten minutes or I'm in agony!!
I'm disgusted with the length I've had to wait to get this sorted out knowing that I'm in critical medical condition.
It is breaking me down changing me and ruining my social life and relationships!!
I'm waiting now for referral hopefully it won't be to long. Oh and I demanded to see a sound specialist too as I have bad osteomalacia in my lower spine and leg and have a metal rod and screw in my leg since 2004 which is s possibility it could be nerve entrapment or compression.
Whatever it is I shouldn't be suffering like this I never had this problem before I could go hours without needed to go to the toilet and could drink like a fish but now I'm scared to drink cos it goes straight through me and aggravated my bladder causing nasty continuous spasms. I can't even sleep at night cos I'm up every hour.
I have to get up like 4 for some of the day and then collapse for about 2 hrs later in the day then by mid evening I'm exhausted again and have to go to bed for another 2 hrs not without having to be disturbed to go to the loo each time and it goes round like this every day leaving me feel useless trapped agitated and angry and tearful.
I needed to vent this out as I feel so misunderstood by those close to me they just don't seem to understand. It's not really their fault but I just feel so alone in my agony and ailment. 😔
I just hope I get some results soon with these referrals.
Watch this space and I get back when I hear some news x