Peeing blood for months…no answer yet

[Kristen]

Hello,

I hope people can help me or experienced what I am going through. I am 20 years old, and in my fourth year at Brock University for Concurrent Education (teaching). I have been peeing blood since Christmas (2017). The blood in my urine is constant. Every time I pee, there is blood in it. It literally looks like red food colouring has been dropped in the toilet every time. Sometimes there will be clots or little tinny blood vessels when I wipe. I have no pain whatsoever. I have seen the urologist and she has done ultrasounds, x rays, a CT scan and the scope up the bladder. She told me that everything looked okay in my bladder and kidneys and everything seemed to be working normally. Unfortunately, I cannot remember if the urologist ruled out bladder cancer or not. She referred me to a gynaecologist who also did an ultrasound and a Pap smear. The gynaecologist told me everything in my uterus and cervix looks and is working normally and told me there was nothing else she could do for me. I have my follow up with my urologist in November, which, almost marks my 1 year of peeing blood. I am very scared because no doctor knows what’s wrong with me and the wait times to see the specialists are ridiculous. I feel defenceless because I do not know what to do, and I’m stuck here literally peeing blood every day, every time I pee. It is stressful beyond belief. Especially since university has started up again. Many people are telling me not to worry about it or they say I’m fine. But it’s hard to say that without knowing what I am going through. The blood has to be coming from somewhere!! Again, I am really scared and do not know what to expect or do anymore!

• This topic was modified 6 years, 2 months ago by Kristen.
• This topic was modified 6 years, 2 months ago by Kristen.

[Jack Moon]

Hi Kristennnn
Sp sorry you are going through all this with no answers as to the cause of the blood in the urine. You have consulted with the right doctors. If you did have a scope by the Urologist, she has ruled out bladder cancer.
You have had all the tests that are normally used to detect either bladder or kidney cancer.
Hopefully when you see your Urologist in Nov she continues to rule out bladder and kidney cancer.
I wish I could be more help, just wanted to show you my support.
All the very best,
Jack

[Kristen]

Hey Jack,

Thank you for replying and showing your support, it really means a lot to me. I hope she will do further testing in November and hopefully find an answer as to why this is happening!

Thanks again,

Kristen

[Meghann]

Hi Kristen,

I’m so sorry to hear this. I bled for 4 days and I’m still freaking out so I can’t imagine how I’d feel if I hadn’t stopped.

Check out my post a few below yours called “too young for bladder cancer”. It tells you my story plus others have shared quite a bit. Feel free to message me as well if you need to just talk.

I read that 1 in 5 people that bleed have bladder cancer but half of those 5 are never diagnosed and never find out what’s wrong. Apparently our bodies can just be weird like that.

I suggest making a list for your next appointment wish all the questions and things you want to talk about. I started a list this week and I keep adding to it almost every day so I don’t forget anything.

My first consult with a urologist is next week 😳

Meghann

 

[prsevr2win]

Hi Kristennn,

I agree with everything Jack has said and think you have done everything you possibly can.  I would strongly urge you to continue with regular follow ups with your urologist (maybe try every 6 months if possible) until the blood disappears or they have determined the cause, just to be on the safe side.

Try to keep your spirits up and remember you are not alone. There are many of us in the BCC group who are here for you ready to give you support whenever you need it!

Good luck!

[marysue]

Hi Kristenn:

I hope that you do find the cause of the blood in your pee.  With women it can be gynological or urinary tract issues or both. Please keep persevering. You are very young, too young to have such a possibility of something as serious as bladder cancer.

I have the following thoughts:

You mentioned that your uterus and cervix were checked but did your OB/GYN check out your ovaries for any sign of abnormality?  Have you been checked for polycystic ovarian issues?

Are you on any medications for another health condition where it could be a side effect?

When you had your cystoscopy exam, did your uro check out your urethra?  Tumours can grow there albeit it is rare.

Are you positively sure that the blood is actually coming from your urethra when you pee and not your vagina or rectum? If you have blood stains on your underwear the location of the stains may give a clue.

Anyhow…just thoughts.  Wishing you the best and hope that you get answers. ((((HUGS))))

[Kristen]

Hey Meghan,

I did check out your post and reading it and all the comments is what sparked me to share my story. I have a notebook where I’ve been writing everything and I have a whole bunch of questions for my urologist.

Thanks for reaching out to me!! I hope everything goes well for your urologist appointment, keep me updated

Best of luck!!

Kristen :))

[Kristen]

Hello Prsevr2win,

Thank you for responding! I saw my family doctor yesterday and she told me to call the urologist so I got in for next Friday. I think they’re going to do another cystopsy and take a bunch of urine samples.

Thank you for the support, I really appreciate it!

Kristen :))

[Kristen]

Hey Marysue,

The gynaecologist did ultrasounds and said my ovaries and everything else looked like they were working properly. Only medications I’m on is a multivitamin and Birth control. When this was first happening I asked my family doctor if this could be a result from my birth control and she told me that I’ve been on birth control for years and it hasn’t done this so she ruled that out. As for discharge or blood, there’s never anything on my underwear, I can see the blood in the toilet and on the toilet paper when I wipe though. It’s very strange. The gynaecologist told me to put a tampon in and then go pee and if there’s still blood in the toilet with the tampon, it’ll prove it’s not coming from my uterus. I haven’t tried that yet.

Thank you for the support and reply, I really appreciate it! It’s nice to know there’s other comforting people out there beside my close friends and family

Kristen :))

 

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