Bladder spasms!!

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. πŸ˜”

I just hope I get some results soon with these referrals.

Watch this space and I get back when I hear some news x

Sakinah 🌹

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  • I feel sorry for you I don't have anything I can say for medical help. But I do want you to know that those doctors need to get there heads together and find a way to help you. You are not from the USA are you because you called the toilet the loo.

    See I read your whole story and how the doctors don't know there bottom from there elbow. Ok it isn't bottom but I didn't think it was appropriate to say what it really is.

    I really hope your doctors get there act together and help you.

    I wish I had something to say that would help you.

    Good luck.

  • "Arse" is the word you're struggling to avoid.

    Father Jack knew his from his elbow. πŸ˜‡

  • Loool u were avoiding that word not meπŸ˜‚.

    Not a bad word and so bloody true about them drs I gotta tell them most of the time their job cos they do clueless. Seriously and they suppose to have trained for years for a doctorate. Just go a bit if researching with a bit if common biological sense and I know more than them.

    Doh?! πŸ˜‚πŸ˜‚πŸ˜‚

    Seriously bit its true!!

    Better get some sleep mad legs. Love your name by the way does it suit your personality? πŸ˜‰

    You crazy funny? πŸ˜ŠπŸ‘πŸΎ

    Go to sleep friend u need it. I look out for you again soon. If you oust again I'm gonna caringly ignore you!! xx

    Gentle hugs and sending you relaxing vibes to relax πŸ‘‹πŸΎπŸ‘πŸΎ

    Sakinah 🌹😊

  • Yep- I'm crazy nutcase. No hope- lost cause. Waste no time on me.😨

  • Ssdw1958

    πŸ˜‚πŸ˜‚

    Thank you so much for you acknowledging my post. It was very uplifting to be heard.

    You are so right about those drs and I'm from London. Lol.

    Let's just hope like I said in my post I get results this time with these new referrals. Inshallaah God Willing!!

    I wish you all my He best and hope you are managing with any ailments you maybe suffering from. Gentle hugs to you for your kind words of encouragement.

    πŸ™πŸΎπŸ‘πŸΎπŸ’œ

    Sakinah 🌹

  • I also want to thank you for your kind words. You have a great day, peace be with you all day long.

    πŸ‘πŸ˜Ž

    I can't believe it's almost 4a.m. and I still can't sleep. Well good night 😴

    for now or should I say good morning πŸ˜ƒ

  • Restful sleep 😴 my friend. I've been up every hour it's 8am here in London but been up back and forth all night?!! πŸ™ˆπŸ™ŠπŸ˜΄πŸ˜΄πŸ˜΄

  • πŸ˜ŠπŸ˜΄πŸ˜ŽπŸ˜ƒπŸ˜βœŒπŸΎ

  • πŸ’œπŸ’€πŸ’€πŸ’€πŸ’€πŸ’€πŸ’€πŸ’€

  • Hi this is ssdw1958 I hope you were able to catch some zzzzzzi caught a few big day to day that is the eclipse but remember don't look πŸ‘€ up. I got some of those glasses don't you know the type I got were recalled but I may just put s punch whole in a paper and look through it with my back towards the sun and see what happens or I could just will watch it on TV. We will see if I'm awake at that point LOL well I hope your have a good days well goodbye For now

  • so so sorry you are going through this,I feel for you badly for you I get a lot of urine infections but still cant imagine what you are going through so awful, doctors dont seem to consult with each other in a way that meets the patient needs,shame on them

  • could you hip be out some times I am out in the pelvis and it hits on the bladder giving me spasms where ti feels like I have to pee every few min. I get the pelvis aligned up correctly and it stops... Have to thought of this idea?

  • πŸ‘‹πŸΎ hi kimliejo

    Not it's not my hip but it could be the rod and screw in my leg pushing on the nerves near my bladder.

    I also got osteomalacia in my spine and that could also be affecting my nerves near my bladder.

    I'm being referred to a spine specialist to have it investigated.

    I'm just hoping they come up with some results cos I'm sick of it now.

    Thank you for your advise I'm just gonna wait and see what they say.

    Sakinah 🌹

  • hope all goes well for you with the right doctor to find the cause and you feel better soon.

  • Hi Sakinah111 it's me. ssdw1958 Aka Sandra how is it going it's going the same here the temperature is cooling down a little bit which is good.

    I was thinking about you i get and do have kidney stones those little bugger they are the size of a needle head I have had many taken out I remember one I had out any they put a stent in well this one shifted in me and the not my regular urologist had said well I don't want to take it out so early and I said it needs to come out and he said well you can go to the emergency room and I said no I said it need to come out now he did it. And I remember making a follow up appointment and the receptionist asked how I was feeling and I said hey I think I can dance and she looked at me and I said and I couldn't dance before ha ha. What I'm trying to say is there's got to be at some doctor out there that can help you. I hope you have a good day and let you know that someone is listening to you it's me bye for now LOL

  • πŸ‘‹πŸΎ hi

    I remember when I was 14 I had two nasty kidney stones one in the urethra and one in the kidney that one was a bugger it was called a stag stone!!

    My kidneys are filled up with stones and get them every now and then. When they pass they are excruciatingly painful!!

    It was nice fir you to be thinking about me x.

    I'm on dialysis now as my kidneys shut down. Last two sessions have been bad with withdrawal affects.

    I'm in the process of seeing a urologist about my Nasty bladder spasms πŸ˜–πŸ˜–

    Hope all is well with u in your world and coping.

    Look forward to hearing from you again.

    Sakinah 🌹

  • I am doing fine I am scheduled to have my first infusion at the end of September/ with Ocrevus.

    I am not sure πŸ€” of my feelings I guess you could say I am nervous,

    But I guess that's normal when taking new medicines. I will read up on it more and email my doctor with any questions.

    FWI I have about 11 kidney stones how much fun is that NOT ANY FUN

    Bye for now.

  • Keep me updated good to vent and share. Xx

    Sakinah 🌹

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