Not sure what I have, nor are the doctors - any ideas?!

Posted by bob_dc @bobdc, Oct 14, 2011

Not sure what I have, nor are the doctors - any ideas?! It's a rather long history but I'll try to be brief. On June 21 I had heart surgery to replace my aortic valve and ascending aortic root. This was a successful surgery as far as the heart is concerned .. but almost immediately from my recovery in the hospital, I had a undetected bladder blockage. I was complaining to the nurses about feeling distended and difficult urination, their response was it was all "normal". To make a long story shorter, I was eventually released after 4 days. Within 3 days of this my kidneys failed and I ended up in the ER and on a catheter and admitted to the hospital. Within 24 hours I lost over 20 lbs of fluid. My kidney function returned but the urologist said I needed a "roto-rooter" or TURP. So, three weeks after heart surgery I had the TURP. By-the-way, I'm not overweight and a 52 yr old male, no history of diabetes, smoking or bladder problems and have always exercised regularly. So NOW, it's three months later. I have "prostatitis" which is inflammation of the prostate. I have seemingly other symptoms though, burning pain in my bladder (yet clear urine, no infection shown), occasional nausea, very lethargic at times, droopy eyes and confusion at times, difficulty concentrating. I've been seeing the doctor(s) regularly but everyone is running out of tools and I think I'm being misdiagnosed. Maybe I'll find out more tomorrow. I had blood drawn today. I have a MRI scheduled for next Monday but hasn't been "approved" by insurance yet. All the above symptoms seem to come and go randomly and sometimes with great intensity. My pain is generally lowest when I wake in the morning and gets worse later in the day, particularly the evening. Anyway, I thought I'd post here in case anyone has an idea. I worry about an "infected bladder" or stomach ulcers, I can't figure this out! Thank you for reading. 🙂 Sorry, no paragraph breaks, this interface doesn't seem to allow it!

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My husband has been to doctors for years with similar problem with bladder. Apparently his symptoms are worse at night - the prostate swells and he feels the need to urinate frequently during the night but cannot urinate unless he walks around for a while or sits down to pee. I feel this is what causes him to be lethargic during the day - because of lacking a good night's sleep. His bladder seems to function better during the day. His current doctor wants to perform TURP surgery. He is unsure what he should do at this point. Any suggestions would be appreciated.

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Hi @needtoknow, welcome to Connect.
I'm tagging @elizalde who had TURP surgery and @katemn who's husband who also had the surgery. I hope they will be able to share their experiences.

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@colleenyoung

Hi @needtoknow, welcome to Connect.
I'm tagging @elizalde who had TURP surgery and @katemn who's husband who also had the surgery. I hope they will be able to share their experiences.

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Thank you.<br />
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Hello Need, so sorry for all you are going through! All I can add is that my poor husband went through SEVEN years of doctors handing him 7-14 days of antibiotics for UTI's .. NEVER getting to the root of the problem. FINALLY we started going to a winter home in South Beach and using the University of Miami. When they saw the 7 year UTI history they started to investigate.

As you age .. you learn more about medicine than you ever wanted to know. What we learned is that the prostate has very little blood circulation. My husband had had a prostate infection that had NEVER been cleared up by all those short term antibiotics. The U of Miami then did a TURP three years ago. My husband has NEVER had a UTI since.

Based on our experience with this and other experience .. my personal recommendation is: get to the Mayo Clinic at Rochester MN .. THAT is mecca as far as I am concerned (a doctor there takes care of a rare lung disease that I have) .. Mayo because they put together a team of doctors until they figure out what is going on with you. Frankly, people fly into Mayo from all over the world .. and we have it right here! My opinion is that we are only given one body in this lifetime .. AND NOBODY cares about it more than we do! We MUST be our own best advocate in this day and age in the medical arena. Sorry but the old days of the family doc are no longer. YOU must seek out the best for yourself .. no one will do it for you! If I sound like a Mother Tiger .. I am .. I have had an ill husband that I've had to research for .. fight for .. love and take care of .. gladly.

Best of luck to you .. just adding what I know about a TURP .. research and do your own "due diligence".
Sending you a Big Hug!

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@katemn

Hello Need, so sorry for all you are going through! All I can add is that my poor husband went through SEVEN years of doctors handing him 7-14 days of antibiotics for UTI's .. NEVER getting to the root of the problem. FINALLY we started going to a winter home in South Beach and using the University of Miami. When they saw the 7 year UTI history they started to investigate.

As you age .. you learn more about medicine than you ever wanted to know. What we learned is that the prostate has very little blood circulation. My husband had had a prostate infection that had NEVER been cleared up by all those short term antibiotics. The U of Miami then did a TURP three years ago. My husband has NEVER had a UTI since.

Based on our experience with this and other experience .. my personal recommendation is: get to the Mayo Clinic at Rochester MN .. THAT is mecca as far as I am concerned (a doctor there takes care of a rare lung disease that I have) .. Mayo because they put together a team of doctors until they figure out what is going on with you. Frankly, people fly into Mayo from all over the world .. and we have it right here! My opinion is that we are only given one body in this lifetime .. AND NOBODY cares about it more than we do! We MUST be our own best advocate in this day and age in the medical arena. Sorry but the old days of the family doc are no longer. YOU must seek out the best for yourself .. no one will do it for you! If I sound like a Mother Tiger .. I am .. I have had an ill husband that I've had to research for .. fight for .. love and take care of .. gladly.

Best of luck to you .. just adding what I know about a TURP .. research and do your own "due diligence".
Sending you a Big Hug!

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Katherine: Thank you so much for your reply. As you know from your experience, this is driving my husband and I crazy. Thanks to your advice, we are a bit more relaxed about this issue and feel we can, with the help of good doctors, figure out what to do. Hugs to you too!<br />
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