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Bladder wall thickening on ct, normal cystoscopy

Posted by blinkie0531 @blinkie0531, May 22 1:38pm

Hi, I suffer from severe urinary retention. I’m voiding several times a day (10-15) and at least 3 at night. I had a CT done and the only finding was Mild diffuse bladder wall thickening, which may represent cystitis. My cystoscopy was clean and they said presented no issues. I’ve been dealing with these problems for 6 years now and nobody can figure out why I retain urine. At times it’s so bad the urine backs up into my kidneys. I am at my whits end and wonder if anyone else has similar problems.

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Cheryl, Volunteer Mentor | @cehunt57 | May 23 7:17pm

I had a pancreas transplant 2005 that was connected to my bladder for the purpose of monitoring pancreas enzymes in the urine to identify early signs of rejection. Problem was the enzymes are similar to what is used in drain cleaner and my bladder really disagreed with that! It caused urine retention and big blood clots in the urine. A cystoscopy revealed that my instincts were correct. That hook up was a bad idea! I ended up having a 2nd surgery called an enteric conversion. This was to take everything out, clean up everything, put everything back in and hook up the transplanted pancreas to part of the colon. I found out that they no longer use that bladder hook up arrangement when they do a pancreas transplant.
My situation was different than what you currently have but “mild diffuse bladder wall thickening, which may represent cystitis” sounds concerning to me and not like a “clean cystoscopy”. Could it be presenting issues after all? Could you get a second opinion on the results of that cystoscopy?

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blinkie0531 | @blinkie0531 | May 23 11:26pm
In reply to @cehunt57 "I had a pancreas transplant 2005 that was connected to my bladder for the purpose of..." + (show)
Profile picture for Cheryl, Volunteer Mentor @cehunt57

I had a pancreas transplant 2005 that was connected to my bladder for the purpose of monitoring pancreas enzymes in the urine to identify early signs of rejection. Problem was the enzymes are similar to what is used in drain cleaner and my bladder really disagreed with that! It caused urine retention and big blood clots in the urine. A cystoscopy revealed that my instincts were correct. That hook up was a bad idea! I ended up having a 2nd surgery called an enteric conversion. This was to take everything out, clean up everything, put everything back in and hook up the transplanted pancreas to part of the colon. I found out that they no longer use that bladder hook up arrangement when they do a pancreas transplant.
My situation was different than what you currently have but “mild diffuse bladder wall thickening, which may represent cystitis” sounds concerning to me and not like a “clean cystoscopy”. Could it be presenting issues after all? Could you get a second opinion on the results of that cystoscopy?

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Mayo was kind of my last hope. I’ve seen 6 different urologists now, none of whom have been able to help me.

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crowescott | @crowescott | May 24 9:21am

I’ve had IC for 25 years, unable to get into Mayo, with urgency, frequency and retention. Following a uro-dynamics test I couldn’t pee. So for past 6 months I must self cath 10 x day. No diagnosis. Muscle or nerve damage? Trying PTNS. CT shows bladder wall thickening.

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crowescott | @crowescott | May 24 9:27am

P.S. In order to avoid kidney or further bladder damage sounds like you need to self cath. I’ve been up several times a night for years.

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blinkie0531 | @blinkie0531 | May 25 1:09am
In reply to @crowescott "P.S. In order to avoid kidney or further bladder damage sounds like you need to self..." + (show)
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P.S. In order to avoid kidney or further bladder damage sounds like you need to self cath. I’ve been up several times a night for years.

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There has to be someone who can figure out what is wrong with us.

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s1baum | @s1baum | Jul 11 2:00pm
In reply to @blinkie0531 "There has to be someone who can figure out what is wrong with us." + (show)
Profile picture for blinkie0531 @blinkie0531

There has to be someone who can figure out what is wrong with us.

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this is a bit off the wall and a bit of a stretch but what about endometriosis?

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