posted
I went to my urologist almost 2 weeks ago with a "bleeding bladder" ------ it was like a "mini miscarriage!" I was put on 5 days of Cipro until a urine culture came back.
I go back tomorrow for a second scope of my bladder. I'm better, but sometimes feel like maybe *something* is trying to come back. (I also think the 5 days of Cipro messed with me neurologically/emotionally. I was a wreck. Mad at the world, upset at the slightest thing, crying, irrational, etc. Maybe a coincidence?)
Anyway, the urine sample was catherized straight from my bladder before the scope, because I couldn't pee. It was sent off for the culture.......and grew NOTHING, however the Cipro seemed to help my sx. Huh? No infection, but the abx helped?
I found out on Friday that they didn't do a complete urinalysis, even though the doc commented "Oh good, there's blood in your urine sample." He only ordered a sensitivity test to find the appropriate abx, which I didn't seem to need afterall. YES, I'm FURIOUS!!!!!!!!!!!!!!!!
Am I wrong in thinking that they could have gathered pertinent info from doing a complete urinalysis ------- counting the red blood cells, check the protein level, etc.? I mean, obviously something was wrong!!!!!!! AND, no other labs were done!!!!!
Has anyone had anything like this? I'm talking bright red blood, then small clots. I've never had anything like this, however I've always had the tendency to have bladder issues. (BTW: I had a complete hysterectomy in 2002.)
When I saw my bladder on the screen during the scope, there were big patches of ulcer-type areas or something like that..........also, I was extremely inflammed. I had pain on my left side, like my left kidney area -------- which radiated down through my butt. I also had a time or two where my stomach became distended from the groin all the way up to my diaphram.
Before the bleeding, I had a few days of off and on sx of a bladder infection, but never signs of a TRUE bladder infection coming on. Then I had the sudden onset of the one day of bleeding.
ANY INPUT????? Anyone else experienced this before? Why would the Cipro seem to help and the urine culture grow nothing "bacterial or fungal." (That's what I was told.)
I keep dreaming up possible theories. I just need some guidance before I go to the urologist tomorrow!
Thank you for anything you can suggest.........
terri3boys Posts: 268 | From Texas | Registered: Aug 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Bladder can be from chlamydia pneumonia. Ask people there for UTI questions and help. cpnhelp.org
Also lyme can make patches and ulcers in the bladder. Any bacteria can do this like pseudomonas ...
If you are afraid about cancer there is a cheap BTT test at any lab just with morning urine.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thank you so much for your info! At least I can check out that website before tomorrow and be more informed........
I had heard that lyme loves the bladder. Could it possible have "shed" some tissue or something? I have no idea what pseudomonas is. I'll look it up.
I can check into the lab test as well. I know at least one of my doctors would order it for me. What's wrong with covering all of your bases?
My hubby is a 2-time cancer survivor --- colon cancer at age 36 and prostate cancer at 42. He was (and still is) the picture of health. Surgery got rid of both cancers with no other tx necessary, except for yearly colonoscopies/CT scans and PSA levels ---- even though he has no prostate.
I can't help but wonder if there is a connection between the two of our health issues. He doesn't have any other issues (but hasn't been tested --- you know men!) It infuriates me.
I had a LEEP procedure done less than a year after the birth of my 3rd child. It was in in '96 or '97. Pre-cancerous cells in my cervix. I had a complete hyst. in '02, but still have my cervix.........I guess ya need to keep that.
Anyway, with the XMRV being directly connected with prostate cancer and CFIDS, I mean DUH!!!! I wasn't ever sick until that last birth, which was OUR only child together. It makes you stop and think.
Well, thanks again! I'll dig into the info you gave me before tomorrow's appt. They just called and moved it up to 9:50am, instead of the 3:15pm appt. I had. Uggghhhh.....
I'll keep you posted. Take care, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
What did they say about pseudomonas?? It's a resistant bacteria.
Many here had their first lyme symptoms following the birth of a child... or following a surgery or traumatic event. It just pushes your body over the edge. You may have had Lyme that was dormant in your body.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
when they did the cystoscopy did the Dr also take a biopsy of the bladder? That can rule out more serious things like cancer.
Cipro has always helped me with my bladder symptoms. I also have IC.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said.. "Why would the Cipro seem to help and the urine culture grow nothing "bacterial or fungal."
Normally they only test for specific types of bacteria when testing.
If they don't test for the right one, it won't show.
If you respond to antibiotics my GUESS is that would be something to pursue... test results or not.
posted
Yes, I DID have pain associated with a bladder infection -------- however it would come and go. This lasted about a week or so.
It didn't feel like a full blown bladder infection because I could go an entire day without any sx. Then the next day I would have some pain, urgency, frequency and the classic "dribble." But it would come and go in the same day as well.
But it was so strange because it would come and go so erratically. It didn't come on like a normal bladder infection, like "BAM!!!" It was like a tease.
I couldn't figure it out and wasn't ready to justify a doctor visit unless it presented like a REAL, I'M NOT GOING AWAY bladder infection. I mean, you KNOW when you've got a true bladder infection.
This was like having bits and pieces of one that would come and go. But on that Thursday morning, there was the bright red blood, then the clots, which all included the pain, frequency, urge, no urine, just the blood and clots. I immediately called and they told me to come in right away.
Yes, I've got IC. Haven't had much trouble lately, until this. I also had a period of time where I had to self-cath for several months. I always have residual as well. My bladder got put in a sling when I had my hysterectomy in '02 as well. It's still nice and snug, I'm told.
That's what made me so mad about the urinalysis! They cathed me and had pure residual urine with blood in it. WHY on earth would they not do at least a run-of-the-mill urinalysis? The doctor only ordered a sensitivity test ---- at least that's what the nurse has told me while she had my chart in her hands.
I didn't bleed anymore after the scope, but I think he flushed me out or something. He gave me the Cipro to tie me over until the culture came back in 5 days. The urinalysis supposedly was based on what the culture grew.
I was told that if there were any bacterial or fungal infection of any kind, that it would be indicated on the culture growth.
I'm going to scream if the doctor tells me, "Well, you're not bleeding anymore and your sx are basically gone, so what's the problem?" The problem is that I get some "echos" of bladder infection sx trying to come back every once in a while, AND why didn't you check my urine sample? You were "glad there was blood in my urine" --- DIRECT QUOTE!!!!
We talked about doing a biopsy, but he said it would have to be done on an out-patient basis and that we should pursue the culture first. It sounds good in theory, but there are SO MANY things to consider with all of my health issues!!!
I don't know, I love this doctor. He saved my husband's life by detecting the prostate cancer at such a young age and he did the nerve-sparing surgery as well.
I DON'T want him to tell me "let's try a 10-14 day course of abx and then see where we are." I'd rather be more aggressive and do the bladder biopsy. I guess it all depends on how my bladder looks when we do the scope. If it looks all nice and pretty, then what?
HELP!!!!!!!!!!!!! All of your advice has been wonderful and helpful, but I'm just trying to play out in my head how I want to handle tomorrow morning with him.
Suggestions are greatly appreciated more than I can tell you!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
If it is IC from chlamydia they will not find a bacteria - they call this non bacterial infection,IC. Post for these people who had IC all their lives, they have husbands as well and know more.
I think there is a connection. When they find a bacteria it also can be IC but sometimes they find just an harmless opportunistic bug and not the cpn. Cpn can be tested by taking NAC. Also your husband should be tested.
Ask for the bladder tumor test BTT, it is non invasive. Also get Siemens dipsticks with 9 fields on and check your urine yourself for some time. I would not think you need a biopsy immediately, it is damage to the bladder wall. BTT once a year with your husband's history.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thank all of you again! How can you have an infection that's non-bacterial? A viral infection, parasitic infection, what?
What should my husband be tested for? Cpn, BTT, Lyme, HHV-6, CMV, EBV, Babs-WA1, Bartonella....... just to name some of my "friends" that live inside me? I can't remember the rest, I'm too tired.
What all can be passed back and forth between the two of us? I think we have something that we're sharing (and neither one of us were promiscuous.) I just can't believe there's not some sort of connection.
Now, getting him to get tested will be a GIANT ordeal. He only goes to the doctor when he's got full blown cancer...........he won't even take tylenol, or allergy medicine (which he needs desparately) or anything. He's too stoic and that's not always a good thing.
I'm rambling..........my meds are kicking in and I need to hit the rack.
I'll still welcome any comments.......however, my appt. is at 9:50am, but the sprinkler/outside light guy will be here at 7:00am, I need to myself "put together", and get my 15 yr. old to the camp where he's a counselor by 8:30.
I'm going to ask my urologist for a copy of all of my record (for my files.) Is that a good or bad idea?
Posts: 268 | From Texas | Registered: Aug 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Terri,
when they are not able to find a bacteria they know of - they will call it IC. They say it is non bacterial as they are not able to identify a bacteria.
But a urologist has complicated infections not on his urin tests: like lyme, bartonella, chlamydia ... he cannot detect them
IC means probably : we do not know which one. Many people report that their IC was chlamydia pneumonia. I have no personal experience with this and referred you to them.
I think it is good your husband does not take tylenol and allergy medicine, he probably feels they are bad for him. The cancer might be from viruses, ask in the cancer group, they should know. For CPn test you take NAC and if you get flu like symptoms you probably have it. Details are on cpnhelp.org. The BTT is only to test for bladder cancer just for your peace of mind.
Posts: 1834 | From US | Registered: Oct 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Yes- it is always a good idea to get a copy of your medical records.
How did the appointment go?
you can have an infection like Tincup said they dont culture for- the test can only grow certain bacteria..others will not grow or are very slow growing and need more time at the lab to grow.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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