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Appointment for Uro-Oncology

CookieC
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I have been suffering with haematuria (non visible) for at least the past 3 months and what feels like an awful kidney infection (suffered with these when pregnant) however urine test/s all came back negative. I had a ultrasound scan before Xmas and they found my bladder is not emptying fully and there is swelling on that right kidney. Stones and cysts were ruled out in A&E and the pain is incredible. Paracetamol and Ibruprofen aren't touching the sides and I'm on amytriptlyine which is taking the edge off but makes me feel very spacey and groggy. When actually all I could do anyway is sleep and have zero energy even making dinner is a strain. Signed of work before Xmas but been off sick the last few days too. Now have my appointment for CT scan and flexible cystoscopy next week at the Hematuria clinic with the Uro-oncologist. I'm 38, married with 2 kids and also in process of moving house

 

is anyone else going through a similar thing or have been recently? The pain and exhaustion are awful right now, I'm at a point where I just want to know what is going on

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    Poor you CookieC you seem to be going through a lot at the moment and it seems to be really exhausting having to be signed off work too while this is going on. And on top of that having to look after 2 kids and being in the process of moving house! I hope you can get some help at home with the daily chores like making dinner or dealing with the house move so you can rest. You seem to be in so much pain and I really hope you get some answers soon. 

    I hope your appointment next week at the Hematuria clinic goes well. I know it is really hard but try not to worry too much or anticipate what it might be. The best thing to do to avoid thinking too much about this is to keep busy and distracted if you can and avoid looking things up online. I can imagine it is hard for you to do this at the moment but it will help you feel a little less anxious. 

    I hope you will also hear from others here who have been through all this before and that they will be along soon to share their story with you. 

    Keeping everything crossed for you that everything turns out fine. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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    Hi CookieC.  Welcome to the forum.

    You really are going through it at the moment. To the best of my knowledge (and I'm not a doctor) CT and flexible cystoscopy are the next logical steps to get to the cause of your problems.

    Regarding the pain, I suggest you go back to your GP and ask whether he/she can safely prescribe a paracetamol+codiene (co-codamol) tablet, such as Zapain, and/or something stronger than Ibuprofen.  I wouldn't recommend buying co-codamol from the pharmacist, since you'll only get 3 days supply and then they'll be unwilling to sell you any more.

    Amitriptylene is a good painkiller, but it's mainly an antidepressant so it's not surprising that you're zonked out.  My wife takes a low dose to prevent migraines, and she actually cuts a 10mg tablet in half which gives her control over migraines but minimises the other side effects.  I don't recommend you try this without consulting your doctor.

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