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intermitent gross hematuria

Posted , 11 users are following.

mike666
mike666

Hi, I'm male - 26

I've been avoiding going to the Dr's for a while now, as I'm very scared.

Every few months, I have a day or so where I urinate blood. Also some bloodclots. No real pain.

Then it will seemingly dissapears for a few months, and will then return for a day or so.

I'm assuming it's something terrible.

Other symptoms seem to be frequent/weak urination.

Sometimes a mild/dull pain in one of my testicles.

Has anyone experienced this? WHy would it be every few months like this?

I plan to call my GP tomorrow as it happened again a minute ago for the first time in a few months and i'm plucking up the courage.

I'm petrified of the cystoscopy. (pain and embarassment)

I had my urine tested for an unralted issue a while ago, and it was apparently 'clean' (even though this was only a day after i'd been urinating what looked like almost pure blood)

How can this be??

What will the process be? (im in the UK)

Will gp send me straight to a specialist?

Even if my urine has no blood in it tomorrow, will they still be able to test it for cancer cells?

 

2 likes, 83 replies

83 Replies

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  • deb42962deb1960
    deb42962deb1960 mike666

    Posted

    H Mike

    i am so happy for you that your surgery is scheduled for Wednesday and that the tumour is likely to be superficial. This is all going to be resolved for you soon. The catheter is held in place by a small balloon that is inflated on first incursion into your bladder. The catheter will take urine from your bladder, you won't feel the need to pee (I didn't). I did find it hard to adjust to peeing on my own when the catheter was removed after a day or so. You may expeience some discomfort again around this time but make sure you tell the ward so you get appropriate pain relief. I'll be thinking of you on Wednesday. Please let us know as soon as you can how things have been. Wishing you all the best. Deep breaths and fingers crossed.

  • mike666
    mike666

    Posted

    Got home yesterday after an overnight stay.

    Woke up in the 'recovery room' in a fair amount of pain, but it was managable unless someone moved the catheter that was in me by a millimeter! then i'd be in lots of pain for a split second. Some of the nurses were surprised that this hurt me, but I must just be really sensitive down there. Much like how the cystoscopy and even the 'gel' hurt me so much.

    I was a little doped up, but my surgeon paid me a quick visit, and said that he didn't belive that the tumour would ''effect my longetivity''

    Obviously I am now awaiting the results, but hopefully that's something to cling some hope on??

    Then I had the chemotherapy going into my bladder which I didn't really feel which was good.

    Then I was moved to the 'ward' with 4 other people in there. Pain was now starting to ramo up a little. I maxed out on some of my pain killers so they had to start alternating and giving me different drugs.

    Thing is, dissapointingly, none of them really worked.

    I was initially pleased because people were telling me ''oh, they have amazing drugs in hospital....your won't feel a thing'

    Even the 'oral morphine' (like a little drink) didn't seem to help much.

    I started having what felt like occasional spasms. Sounds a bit gross, but every now and again, I'd get the feeling like I was about to break wind, but instead, i'd spasm, and then i'd feel somtething trickling onto my leg.

    It turned out it was lots of blood.

    Still not sure how it managed to 'bypass' the catheter and where it was coming from??

    I was getting really anxious now, because I was still in a fair amount of pain, had got through 2 robes due to them being covered in my blood, and I was still waiting for the 2 things I was fearing the most : having the catheter removed, and going for a wee.

    I told the nurse my fears. She told me that maybe it was bessed if she took the catheter out now (this was about 7am) rather than when it was planned to be take out (about 10am)

    I agreed.

    Wow....this hurt!! I had my eyes closed but could feel it being moved and it hurt. I was hoping that it had now been removed, but I think all of this was just things like undoing bits. She then removed it and I shouted and told her I need more pain relief. She said ''it's just about out...hold on'' and then gave it one last pull. 

    Lots of pain, and then a large amound of blood came shooting out all over my legs sad

    ouch.

    She then cleaned me up and gave me another yet robe!

    It was now about 8am and I knew I was supposed to be gone by aboue 10am, and I hadn't had a wee yet. 

    Despite drinking a large amount of water I hadn't really felt the need to go.

    I was also petrified of trying, which maybe also had an effect.

    I had to pee into a cardboard bottle. Had no privacy. 2 guys either side of my and one opposite me. And 4 female nurses buzzing around the general area.

    However, the concept of embarrasment had kind of gone out of the window at this point, and leaned oever and attempted to urinte.

    Pain was extreme. Hot, broken glass all down my urethra.

    I managed about a test-tubes worth of what looked like pure blood.

    Then 10 minutes later, another of what looked like pure blood.

    Done this a number of times until I had a bottles worth of blood.

    Then given a new bottle!

    This surprised people I think, because they removed my catheter when my urine was apparently 'clear', so why would it be just thick blood now?

    Eventually, when it was 'bloody', but still at least the consistency of urine it was about kicking out time.

    I'm home now. I'm just alternating various drugs like codeine, iboprofen, paracetemol etc. I'm not in too much pain, unless I need to urinate.

    Urine is still a little bloody, but I was told to expect that.

    I was in SO MUCH pain as I was leaving the hospital, and they were already talking about booking me in for a cystoscopy.

    I just wanted to shoot myself there and then.

    I can't live much longer with operations like that one and thing going up my penis! the poor little fella has been through hell recently!

    So, i'm glad that bit's over.

    I'm not just praying that there's good news from the lab.

    I've also told them that I was my next cystoscopy to be under general anaesthetic. 

     

  • deb42962deb1960
    deb42962deb1960 mike666

    Posted

    So glad this part of your ordeal is almost over. Hopefully tomorrow you will be in less pain and well on the road to recovery. Good news re what the surgeon said so things are looking up and you should be all up and running for Xmas. Did they say how soon you would hear about the biopsy results. Hopefully not too long.

    deb

    • mike666
      mike666 deb42962deb1960

      Posted

      So it looks like It was grade2 and non-invasive.

      I went to see my surgeon because I am still in some pain when urinating, but I am being woken up by my nocturnal erections which are pure agony and feel like nerves and veins are exploding!

      He said this was unusual but to wait it out for now, and said that as I was there he may aswell give me my results! (although I believe he still needs to see my CT scan results and consult with other experts before the staging is 'confirmed')

      He seemed to be quite positive - I guess due to it being non-invasive.

      For me, it made it all 'real'. Scary. However, I feel more positive than I did a few days ago when my thoughts were very dark indeed.

      I guess I just need to hope that it doesn't recur. I've read so many cases of it recurring again and again after numerous 'removals' where eventually it becomes invasive and even more drastic measures are required that it almost feels like it's bound to happen to me(at what will still be a fairly young age), but then I wonder if maybe you don't tend to see many 'success stories' by nature of the fact that them people don't tend to start topics on forums as they don't need any help or input!

      I hope you're doing OK, Deb.

      Thanks to you and Jaynee for your input.

      Also, Deb, if it wasn't for your comment about how ''if you were my mother you'd be dragging to the doctors'' which made me think about my own mum and played on my emotions, I probably wouldn't have bothered going at all!

      For now they've agreed to do my checkups under general anaesthesia so at least I don't need to worry about the actual procedures at the moment. Only the recoveries and the worry of recurrence and results.

      Hoping i'm one of the lucky ones who doesn't need any repeat surgeries!!

  • deb42962deb1960
    deb42962deb1960 mike666

    Posted

    So glad this part of your ordeal is almost over. Hopefully tomorrow you will be in less pain and well on the road to recovery. Good news re what the surgeon said so things are looking up and you should be all up and running for Xmas. Did they say how soon you would hear about the biopsy results? Hopefully not too long.

    deb

  • deb42962deb1960
    deb42962deb1960 mike666

    Posted

    So glad this part of your ordeal is almost over. Hopefully tomorrow you will be in less pain and well on the road to recovery. Good news re what the surgeon said so things are looking up and you should be all up and running for Xmas. Did they say how soon you would hear about the biopsy results? Hopefully not too long.

    deb

    • mike666
      mike666 deb42962deb1960

      Posted

      Hi, Deb.

      Pain is still the same, but it's managable.

      At the moment, even when I don't need to pee, it 'feels' as though there is urine sitting in my penis and it hurts. I'm wodnering whether it could be an infection, or maybe it's just the next stage of the pain that wuold be expected having had a huge metal instrument stuck inside me!

      Still also have a very weak and split stream.

      Am I right in thinking they would have had a good look at my prostate during teh procedures? Some of my symptoms, even before the operation, are popular with prostate issues. I'm assuming though, that something would have been 'picked' up if there was something wrong there.

      As for the results, I think they said it'd be a few weeks. I can't quite remember if i'm honest. I was told this shortly before being discharged when I was trying not to pass out as I attempted to urinate the blood and my mind was struggling to retain info.

      All I can do now is pray that it's 'good' news.

      It feels weird that i'm waiting on results after having such a painful operation - kind of like I feel i'm not in a better situation for having HAD teh operation! Surely that it's been removed is a good thing either way?? Just kind of confusing. How can it still hurt me if it's been removed?

    • jayneejay
      jayneejay mike666

      Posted

      Hi mike

      So glad you got your op over, it will be sore after, give it time 

      take care 

      Jay 

  • deb42962deb1960
    deb42962deb1960 mike666

    Posted

    Hi Mike

    just make sure you are peeing out what you are taking in. If you don't feel you are, then phone your GP or 111. If you feel your temperature is rising, again phone your GP of 111 as this would suggest a possible infection. It's bound to be sore, they have removed a small section of your bladder. I have a stent in at the moment from my bladder to my kidney and it is murder. I can feel the stent poke into my sidewall of my bladder and it is so very uncomfortable; given how I feel I would imagine you are bound tofeel sore and bruised with what you have been through. As for prostrate issues......stop Googling! I doubt very much if there is anything wrong with your prostate although I am not medically qualified. If you are worried about that though please, at your post op, talk to your consultant to put your mind at ease. 

    Youve been though quite a traumatic few months Mike and hopefully it is all coming to an end now. Please talk to your GP about getting some CBT....your mind seems already to be wandering off to other health issues (prostate) and it's not nice to live with so much stress and anxiety. Here is to hoping that all your results are positive, please keep us posted and take care. Hope the peeing pain goes soon.

    deb

  • deb42962deb1960
    deb42962deb1960 mike666

    Posted

    Hi Mike

    I am sorry you are still feeling discomfort. It sounds as though your nerves around this region are hypersensitive. It seems as though some people sail through a cystoscope with no problem and others don't. It's a shame you are in the latter group. Maybe since you found them so painful it is going to take a while for you nerve endings to settle. Maybe your urethra tube is very narrow and having the procedure has stretched it a bit and it's needing time to recover. You have had so much discomfort it's time you had a break from it all. 

    Non invasive is good and despite the discomfort afterwards, the fact that they are going to keep regular checks on you is also good.

    You are so right about the people who don't post are those who don't need to. I search these forums because I am one of those people with health anxiety and a need to Google! Wish I wasn't and my attitude was more positive. My sister is a nurse and she says we only hear about the bad outcomes, she said we never hear about the good cases of which there are many because it's always the bad things that make the news. I think she is right to a certain extent.

    I'm really glad Mike if I did help in anyway in persuading you to go to your GP although I am sure you would have made the decision yourself to go there anyway. 

    So things are starting to look better for you and I am so pleased. Let's hope this discomfort you are experiencing of a night subsides soon and you can get back to your normal self. I am still recovering from major surgery and the pain around my bladder is finally starting to very slowly ease. It's been over 5 weeks now so I am sure any bruising/trauma to the urinary area as in your case too, must take a while to recover. 

    All the best to you Mike and try and stay positive. Please please don't forget to speak to your GP about a course of CBT. 

    Take care

    deb

     

    • mike666
      mike666 deb42962deb1960

      Posted

      Been in hospital the last 5 days. I was passing jelly-like blodd clots each time I went for a pee . Was told told expect this as about 2 weeks after teh surgery I had is when the scab falls off and you bled a little.

      However, I was bleeding LOTS!  Some clots were as big as about a 1/4 of my little finger. Then, I coudn't pass them at all. Too big. Went A+E. Was only able to give about a teaspoon of blood as my 'urine sample'. Huge catheter put inside me. I just wanted to shoot myself. If he'd have offered me a suicide pill, i'd have taken it. Catheter with saline wash been flushing my bladder, but even after 3 days it was still very dark red, They then done manual irrigation with as syringe in my cathter. Push in half a pint of saline from a huge syringe, and then pull it as hard as they can. You simply wouldn't believe how many clots there were. She pulled out so many blood clots that you can build a life-size head out of them. I then had teh same procedure again the next day and sinc then urine has looked fairly normal. In less pain than I thought I would be from wearing that large catheter for so long. Got zero sleep. Everty time I moved a millimeter in hospital whilst wearing it , I hurt so much. 

      Genunely got about 2 hours sleep per night whilst I was in there so I need to catch up on lots of sleep. Hoping that there's no more clots left in me and any new bleeding will start. I can't keep doing this. Inserting the catheters in me is like torture. I want to buy some chloroform or somthing and keep it in my pocket so that I can effectively 'put myself out' everytime I need to have something like that done.

      I was suppose to start a new temping job for a few weeks at the time this bleeding started, but obviously I couldn't. (lsot my job a good few months ago). Employers aren't going to want to keep staff who work a few days, and then get hospitalised and need a week off, and then need to keep taking days off for various hospital related reasons.

      I feel kind of unemployable now at this young age.

      My life just feels like endless trips to the hospital and then a slow recovery.

      What do people do regarding work/money when in my situation? Am I missing something? 

       

    • deb42962deb1960
      deb42962deb1960 mike666

      Posted

      Hi Mike, I replied to you just after you posted this but I can see now that I can't have posted it correctly! I am so sorry to hear you have had complications. How are you now? Are things improving. It's a bummer about the job. You must be entitled to sickness benefit and I would contact the DWP regarding this. You can't be left with no income. Do you still live with your parent/s? If not, I am sure there is some help, albeit probably not much, towards rent etc. Please contact them Mike. Just Google DWP. I think there is also a benefits calculator you can use. It's a horrible situation to be in when you are temporarily unwell with no job. Let me know how you get on. I'm keeping my fingers crossed for you.
    • mike666
      mike666 deb42962deb1960

      Posted

      HI, Deb. I'm feeling a lot better at the moment. There is still a little pain when I urinate (unless I urinate slowly on purpose and don't 'push')

      Also still pain with an erection ;  which reminds me, I think I've missed out an update.

      Before my last post about being hospitalised, I went to see my surgeon about the pain (mainly when trying to get erect or with extremely painfulspontanious night-time erections)

      Unfortunately, he wasn't able to help me much. He seemed a little surprised, but said it was likely a little referred pain from nerve damage and should resolve itself in time.

      It actually seemed to be getting better, but that is when my bleeding started with me being back in the hospital with things being insterted in me which has put me back to where I was regarding the pain!!

      Anyway, at this visit to my surgeons, he told me that, whilst I was there, he would check to see if the histology results had come back yet!

      I felt a bit sick at that point!

      Long story short, it's about as good as could be expected and was what he told me it would liklely be when he paid me that visit shortly after my initial surgery.

      That is; Non-invasive and 'low grade'. I think the grades are 1-3 (1 being the lowest) so grade2 doesn't 'sound' particularly low, but apparently that's how it works.

      So, it looks like it was contained in the bladder and wasn't able to spread or do me any serious damage. Obviously i'm not out of the woods. 

      They have a very huigh recurance rate, and *if* it comes back, I need to hope that it remains non-invasive.

      I guess I should be grateful that it's not worse, but I must admit I still feel a bit sorry for myself! They say smoking is the number 1 cause, and i've never been a smoker!

      Regarding money etc. I don't think i'm entitled to anything.

      I moved back in with my parents a few weeks ago. I have a little savings that i'm living off of at the moment.

      I don't see how i'd be entitled to any kind of sickness benefit.

      I am able to move around well at this second in time. It's just that I always seem to be having to go to hospital for appointments or for operations which put me out of action for weeks! Nobody (especially temping agencies) want someone like that!

      Fingers crossed my next checkups come up clear and I can put together a few months without interuptions and find (and keep) a job.

      Cheers Deb, and I hope you're feeling better and life is giving you a break!!

       

    • mike666
      mike666

      Posted

      In fact, upon checking, I'd already told that story regarding the grading!!

      The chronology of the layout on my browsers seemed messed up... I'm an idiot smile

    • jayneejay
      jayneejay mike666

      Posted

      Hi mike

      so pleasd things are better for you..

      if i were you i would phone the benefit office up and explain your situation you should be entitled to help even though your with your parents now, you have to have something to live on.. 

      Not your fault your not too fit to work right now ..

      ring and ask the helpline 

      good luck 

      jay 

    • mike666
      mike666 jayneejay

      Posted

      Hi, Jay! hope you're well!

      I just don't think they'd see me as 'sick' thus entitled to any kind of sickness benefit. Also, people who save and have tried to be careful with their money are usually punished and not entitled to anything, lol

       

    • jayneejay
      jayneejay mike666

      Posted

      Hi mike 

      still ask them... 

      your not fit to work right now,  even the doctor could give you something to help you claim, proof of you not being able to work yet etc 

      if you dont ask you wont know

      even fill out  a claim form online i think

      if you paid into the system before then you should ask 

      genuine people always miss out as think they shouldnt try, please try 

      jay 

    • deb42962deb1960
      deb42962deb1960 mike666

      Posted

      You've had some lousy luck Mike. Let's all keep our fingers tightly crossed that you are now in the clear for good. I agree with Jay, contact the DWP or have a go at the on line calculator and see what you might be entitled to. ? Statutory sick pay? I know it's not much but it would be something.

      Yes things are finally picking up for me thanks although I've still got a bit of a way to go yet. 

      Will Urology keep your case open do you know? Sounds as though they should with regular check ups.

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