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severe bladder spasms

sakinahsakinah Member Posts: 14 Connected
edited May 2018 in Disabled people
for the last two years now i have been getting excruciating bladder spasms, agonising pain in my genital regions, inflammation, extreme pain when needing to pee and constant urge to pee every half hour when really sensitive its literally every 5 minutes!!

its driving me crazy, i went to have cystopsy where they investigate the bladder with a camera but they couldn't do it because it was just so painful i screamed and they had to immediately stop?!!
im due to have aprocedure to investigate the bladder under anesthetic as i cant have that camera test this was put in about nearly three months ago now under kings college, and im on a waiting list, its so frustrating because no medication is working to relief the pain, only just gets touched if i take a cocktail of strong stuff tablet oxycodiene, clonazepam, parecetomol and the liquid oxycodeine all at once, then it just about stable!!

is there any advice that anyone can give me to help me with my embarrassing inflammation/irritation pain in my geneital area, its so bad its driving literally crazy and i cant even go out one cos it effects my walking and two i cant be out too long before i get the urge to need to pee so quickly it is so affecting my life to the point of a breakdown seriously.

i can cope with all my kidney problems and symptoms, and osteomalacia but this condition beats the hell out of me literally and i have suffered with pain all my life, but this i just cant cope with and no nothing about it and the kidney and urologist drs are no help in giving me some advice for pain relief even my GP is brushing me off too, trying to stop me from taking the liquid oxycodeine, without it im in absolute agony, i don't take it everyday, only if i need to go out or when im on dialysis to relax the pain and muscles in my bladder cos u have to stay in one place for three/four hours!! nightmare for me!!

i appreciate any comments advice or feedbacks or experiences anyone can share with me.


sakinah xx:)
Redsapphire (sakinah)


  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @sakinah. Reading your courageous post, I struggle to find words. All I can do is express my respect and admiration, and hope that others among our (quite wonderful) membership can find ways to help you.
    Warmest best wishes,
  • lillybellelillybelle Member Posts: 458 Pioneering
    Hi .
    my daughter suffers from something very similar to you. She had pain, urine infections with blood and white blood cells in her urine.
    and cystitis. Her bladder would leak and she has wet herself many times. She is now 27yrs old.
    she had all the tests and her diagnosis was that the nerves in the bladder were over sensitive.( the condition has a name although I don’t know it)
    she has had Botox injections in the bladder twice. And also on some medication and she is a whole lot better.
    they also told her to watch what she ate or drank and to write it down.
    no caffeine , chocolate, fizzy drinks, alcohol etc.
    she has to have antibiotics if she goes into a swimming pool when on holiday.
    but life is a lot better.
    i hope this helps and you are not alone with this condition.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @sakinah, thanks for sharing this with us.

    What you're going through sounds so debilitating- I'm so sorry. I really hope the procedure goes well and you can find some solutions. Whilst others are welcome to share their experiences, please bear in mind that we're not medical professionals on the forum, and so you should always speak to a professional involved in your care about any health concerns.

    I wonder if you've considered seeing a different GP for a second opinion?
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