Cant continue like this....

[Christof]

Hey all....
First, thank god for the internet.... I have possibly found more answers in the last few hours than I have found in the last few months..
I work as an Emergency Room RN. I have been living and working in Florida for almost 5 yrs now, and anyone who know Florida knows "the Season"... The snowbirds can be a godsend to a business, but also make life horrible for those like me in the health-care field... This season was undoubtedly the worst I have had since moving here.
About two months ago, I started developing more LBP than what is normal for me. I have had chronic low back pain since an injury in 1983... The pain would become so intense at work, that soon I felt like I had been kicked squarely between the legs, but it wouldnt go away like it does when you have been "narded"... I then began to lose weight. Night sweats. Intermittent nausea. Constipation. It finally got so bad, I had to tell my manager to take me off the schedule, I just couldnt do it anymore until I found out what was wrong. People at work would tell me how terrible/pale I looked.. I thought maybe I had a bad UTI or Cystitis... Urine clean... I then thought that maybe I had something wrong with my bowels, since I have a terrible family history of bowel cancer... Had a CT with and without contrast, negative except for some small calcifications in my prostate.. Also had so little (virtually none) fat in my abdominal/pelvic region that differentiation was somewhat difficult according to the Rad MD..
Pre and Post prostate massage urine also clean. Urologist, who I didnt want to really go to but the MD of choice was too busy, did not impress me... Did not order a PSA, and as soon as he learned of my back injury years ago, automatically ran with that ball, thinks my pain is nerve/back related.. Had my gastro MD get me an appointment with the Urologist I wanted to see in the first place, I was disappointed in his attitude.. He (and many others I feel) dont really understand how debilitating this pain in the pelvis/abd/testes can be.. I am no wimp by any means. He has me on Cipro 500 mg BID for 4 weeks even though he said he felt it wasnt bacterial Prostatitis. PSA drawn last thursday, but MD out until after Memorial day weekend, so have no idea what it is, I suspect it will be normal.
After all the researching today, I believe I may have a very chronic Prostatitis, non-bacterial. I now think back to years of "low back pain", often radiating to my testicles and groin. I have had "dribble" problems since my mid 30's that I just attributed to getting older. I have also had frequent urination problems, not so much pain, but discomfort and feeling like I was peeing thru a coffee stirrer..
I am an avid Freedive spearfisherman, Mountain Biker, and Hiker. I have been unable to do any of these for several months now. Even lying in bed is uncomfortable with the constant sub-umbilical "knot" pain, and intermittent severe testicular pain. No pain with ejaculation, and have only had blood in my ejaculate a couple times in the last several years..
I am going to call Dr Krongrad's office first thing Tuesday and see about this procedure. I cannot imagine being pain free, it has been so long.. I did have an epididymectomy in 1996 for similar symptoms, and was always disappointed in the outcome, as now in retrospect it didnt solve the problem entirely. It did take away the tender to touch lump, but not the frequent heavyness in my rectum, or testicle pain/LBP that I have had.. It had just never been so bad that I couldnt work or recreate. That is the case now...

Any advice or recommendations any of you may have will be so greatly appreciated. I cant imagine living like this for years, and can tell you that I wont... Dont know how people can..
I dont like taking medications, and have no history of medical problems except the back thing. I take no meds normally, but am taking the Cipro and also pretty heavy narcs right now just so I can function somewhat...

Thanks guys.....

[Arnon Krongrad, MD]

Hi Christof,

First of all welcome to the Prostatitis social network. It's small but as you will soon see it's quite open and constructive. Many of its members have acquired knowledge from various sources that they will share with you.

Secondly, as you surely know, prostatitis is a somewhat nonspecific term that describes a range of symptoms. Its causes are often elusive as are the treatments. For this reason, we aim to share what we have gathered. To the extent possible, we aim to bring data to support various opinions and interpretations. Some are posted on the left of the home page in the form of papers.

Thirdly, you may do well to make direct contact with some of the members. You can do this by posting comments on their individual pages. You may want to start with Ike, who like you is a practicing RN, Jeremy, and some of the others..

Look around and feel free to holler if you need help navigating.

Arnon

[Jon]

Hi Christoff,

You've got it absolutely right about how ignorant doctors can be about the debilitating nature of the pain. I've been suffering from chronic epydidymitis/prostatitis for more than two years now. The epididymitis part of this means that every time I put my foot on the ground it feels like someone just kicked me in the balls. At its worst I could hardly walk, although I'm glad to say that it's improved somewhat. Recently my urologist advised me that blood circulation was important for this condition. He recommended that I take up jogging to help circulate the blood. I can't tell you how discouraging this was. I suddenly realised that this guy had no awareness at all of the pain I was experiencing and had never done so in all the time he had been treating me. If I could bloody well jog, I wouldn't be sitting in his office. I was tempted to say, 'Okay, let's see how far you can jog while I hit you in the crotch with a baseball bat at every step.'

I know that everyone on this forum has probably experienced something similar. This condition is bad enough without the awareness that even the so-called experts have no idea what you're going through and have no desire to find out. [I'm excepting Dr Krongrad from this assessment, of course!]

[CHARLES]

Hi Christof;

Your story is somehow similar. Try to read my paper titled "Free at last" and called Dr. Krongrad as soon as possible.

[Christof]

Thank you all for your replies! Net was down all weekend, so I am just now getting back.. Called Dr Krongrad's office and will get a call-back from Ruth..
Found out PSA is well within normal limits (no surprise to me), so this reinforces my belief that I either have something wrong with the bladder and nerve innervation or it IS the calcifications and chronic severe prostatitis...
I will keep everyone posted here as to what comes next, I feel right now that I simply cant wait to have that damn thing out, no matter what... I was up for 7 hrs today without anything but a Darvocet, and am right back to the hunch-over, want to lie down condition that is the norm for me anymore... Same damn knot in my sub-umbilical area and left testicle pain, and that "golfball" in the rectum feeling... A little nauseated too, ala "narded"...

Thanks again for the warm welcome, and the ability to talk about this so easily with you all... I'm glad that there is finally getting to be groups/sites like this that bring to light that female problems are not the only problems in the world, that men sometimes can have problems "down there" too...

Christof

[Mike Mullin]

Wow...this is my first time in a forum, and I am so glad I found this site. My situation is similar to Christophs, except that I have relatively no urinary pain or ejaculation pain. My Urologist, who I have seen twice now, was very dismissive, and is pushing me in the direction of having a test to see if I am eligible for a tube up my urethra to burn away part of my prostae...which 1. scares me and 2. seems like it is usually a treatment for an enlarged prostate, not a chronically inflammed prostate ( if forget what the procedure is called). It seems that many of the stories are similar, but not exactly the same symptoms. For example, I do not have the pain around my navel, and it does not hurt when I walk or jog. Does anyone have any suggestions for what I should do? Is that treatment effective? Dangerous? I don't mind becoming sterile, I have plenty of kids, but I certainly do not want to become impotent!

[Christof]

Hey Mike.....
What are your symptoms, and have you been diagnosed with Chronic Prostatitis?
Seems that with me, my prostate was a problem, but just one... I had many of my symptoms go away after the surgery with Dr Krongrad, but unfortunately I still have other bad symptoms that may be related to a tumor on my adrenal gland which was found after I had the surgery and continued to go downhill... I cant describe the thrill I get every time I void now, having a stream that I have not had since my 20's, and no severe pain/pressure when voiding.. I also no longer have the severe periumbilical pain, and the testicle pain is gone..
What is weird about the prostate, mine was normal in all aspects after removal.. So why was it causing a problem? That is why Dr Krongrad is doing this study I think, because we seem to know so little about the gland when it comes to symptoms..
Welcome to the thread, and let us know more about your case...

[Mark]

Hi Christof,

What kind of bad problems are you still experiencing?

[Arnon Krongrad, MD]

An administrative suggestion:

You may want to delete all the italicized textin the reply boxes. Our platform has a nasty habit of copying everything you are replying to, which makes the thread terribly redundant and harder to navigate.

Christoff's case shows that prostatitis can co-exist with other conditions. I will let him elaborate on the "other symptoms" and would encourage readers to distinguish between what he is reporting that is and is not relevant to his chronic prostatitis.

AK

[Christof]

I guess I cant edit the one I already posted, but will try to make sure the long quotes are not added... Good suggestion..

The symptoms I have been experiencing since my prostatectomy are not related to the prostate, although my prostate caused me serious grief for years, such as testicle pain, low back pain, and pain below my umbilicus.. But I lost 30 lbs since February, and had severe nausea and loss of appetite. Also having severe arrhythmias that have continued after my prostate was removed, most likely caused by a tumor that was found when I had a CT scan of my abdomen.
Although just a theory of mine, I feel I had chronic prostatitis for over 15 yrs, but then combined with this secondary problem, it all but wiped me out, literally... Now it is so nice to have a stream like a 20 yr old, no testicle pain, no more low abdominal pain, and best of all, it no longer feels like I am peeing through a coffee stirrer!!
I am so glad I had the surgery, and Dr. Krongrad, Hope, and Ruth, treat patients like we used to see 30 yrs ago.. They have continued to call and email me to check on how I am doing, which by the way, not one of my other doctors have done even once.. Not putting them down, but rather stating how nice it is to have that kind of follow up, and compassion.

[Mike]

I am also impressed by the follow up and commitment demonstrated by Dr Krongrad and his team. For the first month after my surgery I was contacted by phone or email nearly daily (sometimes several times in the same day) to see how I was doing and answer my questions.

I have never experienced this kind of focus or commitment from any physician in my entire life.