Chronic Prostatitis, no infection

Posted by tommymac @tommymac, Jun 4, 2023

I’ve been diagnosed with Chronic Prostatitis (no infection). I’ve had it for 8 months now and it is miserable. It started out like a urinary tract infection just in my penis but has spread to my prostate and even up into my stomach. Besides the painful peeing and constant prostate pain I now feel nauseous and have bad stomach aches. Nothing seems to make it feel better. I’ve tried about everything except antibiotics. Antibiotics don’t make sense to me since they can’t find any infection. Thank you!

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I have to say I have been really disappointed in this process. One person told me to make an appointment with Mayo and another hi-jacked my post with his own problems. I thought there was a board that overlooked these comments. Is there a board?

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Did your urine cultures show any growth? Has your treating urologist performed a cystoscope on you and if so has he biopsies any tissue? I’m in agreement with the 2nd opinion idea too. Since you may have had a lot of studies done already I hope, you or urologists (if they are willing) contact a Seattle University Hospital via videoconference. This is the easiest way to determine if you need to go somewhere else. I realize you’re in a somewhat remote location being in Alaska with limited healthcare providers so try and get as much done remotely. If your resources for adequate healthcare are too limited you may have to head to the south to the 48. If you have traditional Medicare with a medi-gap plan you can go pretty much go anywhere. Mayo is also in Minnesota if that helps. I certainly hope you get obtain relief soon and good luck.

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@tommymac

I have to say I have been really disappointed in this process. One person told me to make an appointment with Mayo and another hi-jacked my post with his own problems. I thought there was a board that overlooked these comments. Is there a board?

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No board just a lot of folks with similar problems and not so similar problems. There are mentors who monitor various parts. Some people share their story to show how similar they are to so many others. And you learn what others have utilized to help their particular problem so they share. I hope one of the mentors gives you a much more rounded view than mine. I hope my info helps you out.

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@jenatsky

Did your urine cultures show any growth? Has your treating urologist performed a cystoscope on you and if so has he biopsies any tissue? I’m in agreement with the 2nd opinion idea too. Since you may have had a lot of studies done already I hope, you or urologists (if they are willing) contact a Seattle University Hospital via videoconference. This is the easiest way to determine if you need to go somewhere else. I realize you’re in a somewhat remote location being in Alaska with limited healthcare providers so try and get as much done remotely. If your resources for adequate healthcare are too limited you may have to head to the south to the 48. If you have traditional Medicare with a medi-gap plan you can go pretty much go anywhere. Mayo is also in Minnesota if that helps. I certainly hope you get obtain relief soon and good luck.

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Thanks for the reply. The urine cultures did not show any growth. Yes he performed a cystoscope but did not do any biopsies. Sounds good about contacting a Seattle University Hospital. I will talk to my urologist. I do live in a remote location 50 miles from Juneau. I do have Medicare with a AARP Supplemental. I will definitely consider Mayo Clinic. Thank you very much for your reply!

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@jenatsky

No board just a lot of folks with similar problems and not so similar problems. There are mentors who monitor various parts. Some people share their story to show how similar they are to so many others. And you learn what others have utilized to help their particular problem so they share. I hope one of the mentors gives you a much more rounded view than mine. I hope my info helps you out.

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Thank you, that helps me understand how this works. I was told by a friend that there was some sort of board overseeing this process. Apparently they were wrong.

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Tommy, you can get a lot of additional testing done before you have to travel if you can get a connection beforehand. You can begin to help your process by being sure you have all your medical records together for a referring urologist before hand. If your urologist has the ability to collect it all for you all the better but don’t rely just on them. It’s your health and they have many patients so be in charge of your records. I feel for your buddy and hope you get an answer soon.

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@jenatsky

No board just a lot of folks with similar problems and not so similar problems. There are mentors who monitor various parts. Some people share their story to show how similar they are to so many others. And you learn what others have utilized to help their particular problem so they share. I hope one of the mentors gives you a much more rounded view than mine. I hope my info helps you out.

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Hi @tommymac, @jenatsky summed it up pretty well. Lots of folks jumping into discussions with their own pain and similar problems and sometimes the discussions take a turn or get sidetracked and off topic. Mentors and Moderators do try to keep discussions on topic when possible and the community does have a specific set of guidelines to make Connect a safe place for the members to share their experiences and ask questions from other members. There is a link to the Community Guidelines at the bottom of every page in the footer area. Here's the direct link - https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/.

Members can also report a post by clicking on the three dots at the bottom right of a post and selecting Report comment and entering a text description of the issue.

Hoping you can find some answers and relief soon.

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@jenatsky

Tommy, you can get a lot of additional testing done before you have to travel if you can get a connection beforehand. You can begin to help your process by being sure you have all your medical records together for a referring urologist before hand. If your urologist has the ability to collect it all for you all the better but don’t rely just on them. It’s your health and they have many patients so be in charge of your records. I feel for your buddy and hope you get an answer soon.

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Thank you so much jenatsky. I see the urologist this week and will talk to him about getting the records together. This disease can be incredibly discouraging, constant pain with no end in sight.

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@johnbishop

Hi @tommymac, @jenatsky summed it up pretty well. Lots of folks jumping into discussions with their own pain and similar problems and sometimes the discussions take a turn or get sidetracked and off topic. Mentors and Moderators do try to keep discussions on topic when possible and the community does have a specific set of guidelines to make Connect a safe place for the members to share their experiences and ask questions from other members. There is a link to the Community Guidelines at the bottom of every page in the footer area. Here's the direct link - https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/.

Members can also report a post by clicking on the three dots at the bottom right of a post and selecting Report comment and entering a text description of the issue.

Hoping you can find some answers and relief soon.

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Thank you John. I can appreciate that it is not always a straightforward process. Yours and jenatsky’s comments have been very helpful!

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