Re: Please help.. blood in urine I am terrified

14 years 7 months ago #1351 by ryan
I'm a 27 year old guy and this year has been the worst year of my life. I have doctors investigating heart problems right now and for the past 4-5 months my doctors were tryign to figure out why I've had trace amounts of blood in my urine. The heart situation has taken the highest priority as they've found Right Bundle Branch Block and want to find out why my heart hit 185bpm when I was last ill but now I have a urologist freaking the hell out of me.

First, let me say that I have anxiety / panic disorder bad. I'm scared of medicine that affects the mind.. like terrified of it so I haven't ever gotten medicated for anxiety. I've learned to deal with it the best I could. I have had over 10 urine tests come back positive for trace amounts of blood. I then went to a Urologist and he did an ultrasound on my kidneys with the hopes of finding stones. All he found were small cysts in my left kidney were he said were benign. I was supposed to get a cystoscopy yesterday but when I went ot the office he was running behind by two patients and had surgury at a local hospital coming up.

I explained to the nurse that a girl I had been dating recently revealed that she was told by her gyno that she has a bacterial infection and to pass the info along. She said it's not an STD but it could have complicated my urinary tract according to her doc. While explaining this to the Urologist, I also told him I was really anxious about the procedure since I would be awake for it and wanted to understand it completely first. He told me he didn't have time to talk about it and then do it. He then lectured me saying that he felt I didn't realize how serious the blood in my urine is and that I really needed to open my eyes to what is going on. He said blood in your urine is one of the worst things in his opinion that can happen to your body and that I MUST get it figured out immediately. He then told me that going forward no health insurance company would insure me until I figure things out and that he has already diagnosed 4 men in the past 15 days with bladder cancer of various ages. He then again told me that I need to understand the seriousness of it and then directed me to get rescheduled for the test since we didn't start it right away and he had surgury.

Now, they scheduled me for October 3rd. Of the 3 doctors who have been taking my urine consistently for the past 5 months, as far as I know not a single one has done a culture or cancer cell test. This really upsets me. I'm also very very upset that I had to do my own damn research and find out about this "BladderChek" test that came out recently and was approved by the major medical place to check for bladder cancer. I asked the Urologist if there was anything else we could do and he said that the cysto was the test he needed to do to check for cancer. Then I talk to his nurse today after reading about this BladderChek thing and she tells me that they have it. Why didn't they do this on me???? FIVE damn months and they couldn't use a damn dipstick to check.. the thing costs $40-60 according to the manufacturer.

So now I have to sit here until this coming Tuesday at the latest to see if they can do the BladderChek on me. My Cysto is scheduled for October 3rd. In the mean time, I am TERRIFED. I live alone and I'm supposed to start a new job on Monday. I was meaning to use this weekend to relax and now I'm sitting here scared out of my damn mind. I keep thinking about dying, I feel like I'm dying and I'm getting sad thinking about it. Can someone please give me any advice here. My Urologist is saying that I have a significant risk of bladder cancer since nothing is wrong with my kidneys. Is this true or is he just trying to scare me a bit so I actually get the Cysto done? Also forgot to mention he checked my prostate too it is fine.

Anyone that has gone through this please comment. I really really need advice. What are the chances I'm facing cancer? Here are some general facts :

1. I can hold urine fine although sometimes I get very weird feelings (maybe 1-2x every day or two) going around the prostate area or down the urethra.

2. My urine started splitting a little sometimes about 2-3 years ago. Since then I have felt that there is a buildup right behind the head of the penis almost like something is partially blocking it inside. I just learned to drag my finger along the shaft and then squeeze the head to get rid of this urine. Could a narrowing issue cause blood?

3. I've had a couple girlfriends that I've heard caught some form of HPV (warts). I don't show any signs.

4. My current girlfriend I've suspected has had an infection on / off for about 5 months. I believed so due to discharge she'd get sometimes with sex and / or the smell (which has really f'd up our sex life since it grosses me out). I'm wondering if maybe I've continually gotten an infection from her non-STD related.

5. I drink lots of water, excercise on a exercise bike I own, weight about 195lbs 5'11 and am slightly overweight but overall and average healthy build.

Please help. :(

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14 years 7 months ago #1352 by rentanag

You can have blood in your urine if you have a urinary tract infection, but bladder cancer is a possibility also.  I would think before they did anything else they ought to do a urine culture, and perhaps your doctor could get information from your girl friend concerning her infection (they most definately could be related).
Something you haven't mentioned is if you have any risk factors for bladder cancer, and the two largest are smoking or tobacco products and the other is exposure to chemicals (I'm not sure which kinds) and hair dyes.   One thing we know is that usually the people who get bladder cancer are older and you're 27, but you can read in the Storyboard and the Tales from the Trenches that there are people your age and a little older than you who do have bladder cancer.
I'm not sure how you feel about your doctor's way of dealing with you, to me he seems a little abrupt.  You can always find another urologist, maybe one that isn't so busy at least for the cysto anyway.  Something I've mentioned many times in my posts to people who are anxious about what's happening with them, that they should try deep breathing.  There is a post I made (I'll look for it later and post you again when I find it) where I describe these very deliberate deep breaths, and these sound like something that might help calm you down.  It's good for your immune system as well, and that's something you could do to help your overall health situation.
You have options, things you can do now without having to wait until October (and worry all that time), so do more reading here on the WebCafe.  I know there will be others who will post here and try to help you with your situation, try not to worry so much.  All of us on this site have been there, not everyone's situation is the same, but we all have our stories and waiting to find out is hard.
I'll keep you in my prayers...

Lou Graham

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14 years 7 months ago #1353 by rentanag

I found the post about the deep breathing, it's in Superficial Bladder Cancer and it's on the very first page.  The post is by Whitlo and is titled LIVING WITH BC, and my post that describes this technique is #8.  I hope you can use it, and that it might be of some help with your anxiety.


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14 years 7 months ago #1354 by ryan
Hey - thank you for the response. I wish there were details on the frequency of cases per 1k or 10k or 100k people based off age brackets. I smoked when I was in HS and out of HS. I'd say from 1996 to 2000. At the end I was up to 2 packs a day of marlboro menthol lights but I quit cold turkey in 2000 and never smoked again.

Chemicals, I can't think of anything besides cleaning chemicals for regular use to clean my place. I did have a bladder infection when I was 12 (really bad one too) and had my kidneys checked out + xray done. It went away after antibiotics got through me. The only other thing I can think of and this is really embarrassing to talk about but at the time back then we had a large pool and jacuzzi outdoors. I would sometimes use the pool jets to get off and I remember sometimes if the angle was wrong it'd feel like water shot in. There was always chlorine in the water but I'd imagine it went out afterwards.

I stopped doing that after the bladder infection though. It freaked me out at the time.

I tried to get a urine culture done today but my damn regular doctor wouldn't forward it off without a script from the Urologist. I was so upset because I went there, peed in a cup and left it with them but they ended up dumping it at 4pm. It doesn't make sense to me, what's the big deal about writing a prescription when you're a regular doctor? All I wanted was a culture - it's so stupid. I hate medical processes. I have insurance that requires no referrals so I should be able to do what I want. Now I'm going to have to wait until Tuesday to get a script for that.

My main concern about getting the culture done asap was I've been getting pains about an inch below my belt line which travels up at an angle towards what I can only imagine as being my kidneys. I think that blood aside, the girl I've been seeing may have given me an infection. The pain is making me uncomfortable and I just want to know if there's something going on. This pain is really new, it just started shortly after I last slept with her (couple weeks ago). She just found out she has an infection a few days ago.

I'm just really scared. I'm like already convinced I'm not going to be strong enough to do any of this especially with my anxiety. I mean the scope I can probably get through but if I need surgury I don't know if I can. If it has spread, I'd almost rather find a way to kill myself than deal with surgury. I'm scared of putting my life in other people's hands even when I might die. I don't know, it's just really really freaking me out with this and the heart stuff.

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14 years 7 months ago #1360 by wendy
Hi Ryan,
I'm sorry to hear about all your worries. If you are like me and have a phobia about medical stuff such as needles and procedures, being put to sleep and just being around people in white uniforms...then maybe you should investigate some kind of behavior mod therapy to help you get through these things.

Our survival instincts are a very strong adaption and usually serve to get us through the impossible, but personally I can't do a blood test without valium to calm me down first or I run away in a panic, all very annoying to say the least. I read somewhere that more than 10% avoid medical treatment due to phobias and that is one of the biggest problems in medicine! And totally ignored. Since you are afraid of mind-altering drugs I'd say behavior modification could go a long way and certainly be better than nothing.

First off, you need to see if those urine tests were 'cytology', checking for malignancy, and if they weren't, why not? An addition such as BladderChek or the FISH test could also be done and would increase the chance of cytology being accurate. None of the tests are 100% and that's why the uro is claiming a cystscopy is the way to go. He's probably right. His insistence may be a reaction to your attitude if you seem reluctant. I've found many times that doctors react impatiently when I'm overly anxious and afraid...Something else I've learned through experience is that doctors don't want to discuss more than one problem at a time! So my advice is to stay focused on diagnosing the blood in the urine. Your other symptoms such as the funny feelings when urinating are connected to the uro's field of expertise and he should be willing to take them seriously.

There's no use in agonizing over the hows and whys of what kind of bacteria or infection you may or may not have caught from sex. Just get the tests done and then take the next steps.

BTW, there is an epidemic among young people of HPV, almost 50% have it now in the US. Not all of it causes warts, most of the viruses have no symptoms, yet can cause cancer down the road. So it's important to check for HPV.

Good luck on Tuesday.

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14 years 7 months ago #1383 by Shawn
Ryan, I completely understand your anxiety, you sound a lot like me. A month ago I had significant blood in my urine, it was actually dark in color. I freaked and went straight to the doctor. The doctor seemed really worried since I was an ex-smoker who smoked 2 packs a day for twenty years, history of cancer in my family, and no pain. They did blood and urine tests and did a CT scan the next day.

Two weeks later I had a cystoscopy and was sent away with a clean bill of health. The urologist said that sometimes there is blood in the urine and nothing is wrong. At your age, and your short history of smoking, I'd try to think for the best and wait. The cystoscopy isn't that bad of a procedure. It does hurt (for a few seconds), but is very brief and the whole thing is over in a few minutes. It's definately worth it for the peace of mind alone.

My opinion, and the doctors never corroborated this, is that some medications I take, including daily aspirin for heart attack prevention, caused some clotting problems and I probably bleed more easily than most. I'm probably wrong but you never know. With your heart condition, perhaps you've been taking some blood thinners or something that causes you to bleed easily.

Anyway, my best wishes and prayers to all you brave souls. I'm clear for now, but seeing as how everyone else in my family has ca in some form or another, I feel it's only a matter of time. Good Luck!

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