Just bumping the thread up, also I've just had my appointment come through for the 1st of April. Isnt this too long to wait for microhaematuria that's been going on for this long? Don't know how I'm going to cope with the wait :(

Hello RosenInn

I'm sorry to hear about all that you've been through concerning your health over the past few years. it sounds like it's been a difficult time for you. I'm glad that you've reached out for some support ahead of your appointment with the urology team. 

We know that waiting for appointments can be a really difficult time for many people. The unknown is a scary prospect to face and often people turn to the internet searching for information and answers. Typically most people won't actually find the information they need and are left feeling even more anxious about their situation. please do avoid searching online for answers if you can. 

There is some really helpful information on the NHS website about managing anxiety and I'd encourage you to read through this and look at toms of the advice they've shared. It will help you through the coming weeks. Do also consider speaking to your GP about your anxiety so that they can support you as best they can. 

We know that talking through your concerns can often help. If you'd like to chat with one of our team of nurses I'm sure they will offer any advice and support that they can. They're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

I hope that you have some answers and reassurance soon. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thanks jenn, I think I spend atleast 10 hours a day scrolling through the Internet trying to find answers or hopefully someone who's in a similar position to me but I haven't found anyone yet. I do need to control this anxiety, back in 2020 either visited my gp surgery or spoke to them over the phone and just cried my eyes out to them, most of the time I couldn't even speak because my throat just closed up. But they wouldn't give me anything for the anxiety or to help me sleep. So I won't ask for help from them again this time. But I can't eat and the only way I can sleep is to take a few co-codamol tablets before bed, I know its not the best way but I'm honestly past caring now.

I spend all day just wanting to be on my own so I can scroll through Google and I hate being like this but just can't help it. I need to give my head a wobble, my partners off work for the next 4 days and he won't let me sit and wallow, when he asks me whats wrong I don't tell him, because he knows everything I'm going through but just tells me it won't be anything to worry about, which doesn't help because there must be a nasty reason I have blood in my urine, he never Google anything hes the type that just goes with the flow and never worries, so he hasn't seen the scary stuff I've seen on the Internet. And of course its not happening to him so he'll never understand how I'm feeling.

Thanks alot for taking the time to reply it really does mean alot. I've posted on another forum too and you are the first to reply :) 

Hello Rose

I resonated so much with your post, I am 40 years old male, I have had microscopic blood in urine now for at least 3 years, My GP dismissed it at first as "probably nothing we will not worry about that"  and i ignorantley shrugged and never thought of it again until march 2021 when i had my urine tested again at private GP and still the blood was there, she seemed quite concerned which led me to google and a near mental breakdown!! April 2021 i went privately for ultrasound and cystoscopy in which they found nothing and told me to "forget about it" lol, I Was relieved of course for maybe a day but then i remembered that the blood is still there and must be coming from somewhere so the anxiety continued and does till this day!! I have also had a ct without contast and a prostate exam both unremarkable!  Now i can feel hard lymph nodes in my neck and back of head!  Really at this point i have pretty much gave up, like you I have withdrawn, I Cannot go out with friends and talk of trivial things like i did before, nothing really has much meaning for me now, i am in limbo, my life is now consumed by death! I have no sickness and work as normal but all i do now is work come home and stay by myself thinking, its awful! I hope you get a good outcome and i guess i just wanted to say that i can relate a lot to what you are saying, if you ever need a chat , here i am, Thanks 

Hi heamaturiablues, sorry to hear you are in a similar position to me :( I know how scary and worrying this all is! 

I finally had a cystoscopy 2 weeks ago that was all clear, I think ill be discharged now. I haven't been offered a ct scan which I know is needed to look at the ureters, they said that because ive been having regular kidney scans they don't need anymore imaging! Never questioned it at the time about the ureters but if I ever get chance to speak to someone again I will ask.

Now I'm faced with skin cancer, I've had this small lesion on my leg for well over 5 years but only just seen a doctor about it because I thought it was harmless. He said it looks like basal cell carcinoma and has reffered me to dermatology but because its a non melanoma cancer its not classed as urgent and ill be waiting upto a year to be seen! It could of spread to god knows where in that time. So thats another worry dumped on me. 

How long have you had the swollen nodes? Maybe you should have them looked at just to put your mind at rest abit? Have you been poorly recently? I know they can swell around there if you've recently had a cold etc and can take a few weeks to go down.

Its no life is it being terrified all the time? Sounds like you have loneliness to deal with too. My partners useless at talking to he doesn't really care about anything other than football and he's not a worrier about anything, I'm the opposite! Is there any work colleagues you can talk to about it?

I'm starting to develop a phobia of the sun so leaving the house is now becoming daunting.