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Scared stupid about blood in urine

Posted , 3 users are following.

Lj1028
Lj1028

hi, I'm really scared and seriously struggling to cope. in May 2020 I developed horrendous left sided groin pain that went into my inner thigh, a patch of skin went completely numb on the left side of my pubic bone but the feeling came back after a couple of days.

a couple of weeks later both my legs felt really heavy and sore and I still had this pain in my groin and I had a panic attack and ended up in a&e. they couldn't find anything wrong except blood in my urine but blamed it on my period from 2 weeks before and told me to do a follow up sample with my gp the following week which I did. that also tested positive for blood and my liver enzymes were raised so I was sent for a abdominal ultrasound.

in that ultrasound they found a lump on my kidney which resulted in a urgent 2ww referral to a urologist, the lump turned out to be a benign tumour called a angiomyolipoma and after 3 scans every 6 months I was discharged as the tumour wasn't growing. they knew about the microhematuria but never bothered about it.

a couple of weeks ago I went to my gp about gastro trouble im having and she asked for a blood test and urine sample which again showed blood in it. so I had to wait 2 weeks and send another sample in which again tested positive for blood. so for the 3rd time in 3 weeks, last week I had to take another one in!

I'm having a call from a gp tomorrow and I'm absolutely scared stiff that I've been having blood in my urine for atleast 21 months that I know of and its just been left uninvestigated. I've been doing alot of digging on Google and found out my samples testing positive for non hemolyzed blood which means its come from the bladder and that was only scanned once in June 2020 so whatever is in there has been left to spread and I still have this awful left sided groin pain and that's a sign of advanced bladder cancer! I'm 35 and have to girls aged 11 and 8 and I really don't want to die a slow and painful death infront of them I want to live!

I'm so scared I can't eat or think about anything else, I think I've read most forums. I've never actually seen this blood but I know it's there, I was testing at home in 2020 and it was in every sample. the yellow square was getting green dots on it so defo positive for non hemolyzed blood which means it isn't coming from the angiomyolipoma like I originally thought it might be, but that tumours only 8mm so far too tiny to continuously bleed!

so sorry for the long post but I can't talk to anyone else about it, my partner says don't worry it will be nothing, but how can it be nothing when my groin hurts and I have blood in my urine which is not at all normal!

has anyone else had anything like this for so long? I know this forum isn't very active but I'm hoping someone could please answer me and give me some hope? I'm guessing next stage is another 2ww referral and the last one nearly killed me with worry.

thank you if you've managed to read to the end!

0 likes, 7 replies

7 Replies

  • Lj1028
    Lj1028

    Edited

    update, I've spoken to the gp this morning. she is referring me back to urology. doesn't think its anything to worry about because although the dipstick test showed positive for blood, when it got sent to the lab apparently it was clear! I don't understand that as all my others that have been sent off have confirmed blood present. she said she doesn't think the groin pain is anything to do with it but I beg to differ. at first she was going to reffer me under the 2ww but then changed her mind saying it doesn't meet the criteria so its just urgent and should be seen in a month or 2. I'll keep updating as I know people like to read a full forum, I know I've hated it when people suddenly stop updating and you have no idea what happened to them and therefore no hope! just hoping someone can join me on my journey with similar experience either in the past or currently going through the same thing now.

  • Lj1028
    Lj1028

    Posted

    so I've been watching my urine flow over the past few days and noticed that my urine is darker when I first start peeing and then it clears up and goes clear. could that be the source of blood? would that mean I'm bleeding from my uretha? if so why? I have no pain or discomfort there

  • Lj1028
    Lj1028

    Posted

    seriously I'm googling things all day and all night, hardly eating, hardly sleeping. no one to talk too. cant focus on anything else, I isolate myself at home away from my partner and children just so I can Google. I feel like I'm planning my death I can't find anything positive on the Internet and I don't know why I've had blood in my urine for nearly 2 years! this constant pain in my groin is a constant reminder that somethings wrong, I cant forget about it even for a second. when I do fall asleep I dream of it then bam I'm wide awake again. why is no one replying?

  • Lj1028
    Lj1028

    Posted

    also I've started my period today. I have endometriosis so the widespread body pain is not helping. I'm so miserable, upset and deflated, sometimes I think I'd be better off just dying now and getting it over with.

  • Lj1028
    Lj1028

    Posted

    I know nobody is interested but I'm just logging this. I've had my first appointment come through for the 1st of April. God knows why I have to wait this long when I've had microscopic blood in my urine for almost 2 years. not good.

  • daniela08891
    daniela08891 Lj1028

    Posted

    Hello Lj1028,

    How are things with you? I know that it's an old post but I was wondering if you got any answers. I've been having microscopic blood in my urine for the last few years. I was never sent for any tests before but my new dr wants me to go now. I have severe health anxiety and I'm really afraid of tests and I'm panicking. Was wondering what happened with you.

    • Lj1028
      Lj1028 daniela08891

      Posted

      hi! all they did really was send me for a cystoscopy and that came back clear so they've left it at that. I haven't had any urine tests lately so don't know if it still shows blood but I imagine it does! I do have a tumour on my kidney but its benign thank god but they said that shouldn't cause bleeding so its still unknown! I've been discharged by urology, was hoping for a ct scan or something to check everything was OK with kidneys and ureters but they aren't concerned. try not to be too nervous about the tests, I was too but its better to just get them over and done with ASAP so you can move on with your life. I find it hard to trust doctors words when they say nothings wrong because surely something must be, it isn't normal to have blood in urine but they do know best! Good luck

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