Originally Posted by
delbiker1
Back in January I had what I and my doctor thought was a case of the flu along with a UTI, urinalysis negative, it came back in February, and now has become acute prostatitis. I was back with my PC doc on March 21st, with the same symptoms, but this time much more painful and the urinalysis was positive for bacteria, e coli, and blood. I was put on an antibiotic and a med to help control the abdominal spasms and pain. the diagnosis also included the possibility of trying to pass a kidney stone. I also had a fever that was spiking and dropping. That night, Friday the 21st, the pain got to be excruciating and I could not pass urine. I went to a new ER center that is only 2 miles from my home. They did some diagnostics and blood work, my bladder was full to capacity but could not drain. They inserted a catheter to allow the bladder to empty, hooked me up to an IV to keep me hydrated, and also administered a mild sedative and a stronger antibiotic.
I did get immediate relief from the bladder emptying, but I was still very uncomfortable with abdominal bloating. I had a script for the Cipro, antibiotic, called in and was instructed to use OTC laxatives. Over the weekend, I had some relief from the pain and the fever, but Monday morning my temp spiked back up to 102 and I had a lot of pain in my lower back, and back to the ER I went. They were concerned about the fever returning. A cat scan was performed and it showed my prostate was very inflamed and in bad shape. The Cipro that had been called in was not able to be filled by my regular drug store, so the script was called into a different local store. I was
also instructed to follow up with my PC and a urologist. I still had the catheter, and still do, but my bowels were still backed up and I felt terrible. I guess it was the next day I finally was able to empty the bowels, what a relief. Over the course of the next week, the symptoms and the pain were significantly reduced. I now am almost pain free and the bowels are working properly. I have an appointment with a urologist, but can not get in to see them until 4/6. I have not had a temperature spike that I am aware of, but I still have soaking night sweats .
I have had a lot of spinal issues with numerous surgeries, but the pain from the prostatitis in the worst I have ever experienced. The catheter bag needs to be emptied every 2 hours or so, but that is a whole lot better than the excruciating pain I was dealing with. At this point, I am just hanging in waiting to see the urologist and getting bored and frustrated with laying around doing nothing. I have not been on a bike in 2 weeks, and do not know when I will be able to ride again. I am now able to be more active, but I have to limit what I do and how long I do it. I did some work on bike a couple of days ago, nothing major, just flipping mustache bars to having a rise instead of a drop, which included redoing the brake levers, bar end shifters and bar tape. That wore me out.
I guess the main reason for this post is to relay my experience to others, and state that if you are having issues with these kind of symptoms, do not wait to get it checked out. If what the the doctor told you to do is not working, let them know so the treatment can be adjusted to something that will work. I will not be surprised if I am told the prostate needs to be removed. I sure do not want to go through this again. I have had a couple of weeks that were pure misery that I would not wish on anybody.
I just want to get back to where I can take care of myself in a normal fashion, and get back on a bicycle. I have always been quite thin, but I have lost 15 lbs. and I know my fitness level has dropped considerably. I am going to have to ease back into the biking miles and time, and at 69, realize I may not get back to the same level as before this struggle. I am ok with that, I had already started to slow down anyway. The plus to this? It could be a whole lot worse.
I wish I had seen this earlier. I had acute prostatitis a little over 2 years ago that developed into chronic bacterial prostatitis. MOST forms of prostatitis are thought to be non-bacterial and urologists treat it with finasteride and alfusozin to try to shrink it. Success at that is spotty at best. Chronic non-bacterial prostatitis is not curable, and treatments aren't so great either. Bacterial prostatitis can be cured, but that too can be difficult.
Some advice for you:
1. Your advice about the docs is spot on. If what they are doing to treat you is not working, make sure they know and advocate for something different. If they aren't treating you to your satisfaction, SEEK ANOTHER DOC, and if that doc is not doing so, SEEK ANOTHER until you are satisfied with your treatment.
2. You mention you have an ecoli infection. Have you seen the susceptibility report? It is usually delayed from the ER visit and you have to ask for it. Check out and see whether your ecoli infection is due to an ESBL (antibiotic resistant) strain of ecoli, as they are now pretty common. They are resistant to Cipro and Bactrim, the two antibiotics that penetrate the prostate. If so, you'll need to get on something else ASAP (see below). See if your urologist will consider a consult with an infectious disease specialist.
3. Have you had a CT scan or other procedure to see if you have prostate calcifications? Most urologists believe they serve as a harbor for bacteria and there are studies that show that infections can be resolved if they are removed. Talk to your urologist about that too.
My story:
Came down with a 102/103F temperature when the COVID pandemic began. Went to the ER, and they did blood and urine work, and diagnosed me with an acute UTI. FIRST ERROR: They should have diagnosed me with acute prostatitis. Acute UTIs are rare in males. Acute bacterial prostatitis is not. Acute prostatitis needs to be knocked down quickly, with IV antibiotics if necessary.
They gave me a bag of Cipro and I felt better immediately. But I should have known something was amiss, as I felt feverish again about 2 hours after coming home. I waited until the next morning to take the prescribed Cipro (BTW ... Cipro IS nasty and should be avoided if possible). The next morning, the fever resolved itself.
A couple of days later, the susceptibility report came in and the ER called to say I needed a different antibiotic (it showed the ESBL ecoli infection). They preferred Augmentin, but were concerned that I might be allergic to penicillin (I am not), so they also prescribed Macrobid in case I was allergic to the Augmentin. I took the Augmentin and the fever disappeared and did not return ...
... until a couple of days after I was done with the 10 day dose. I made an appointment with a urologist and took the Macrobid to get rid of the fever in the mean time.
The urologist took a urine sample, did an ultrasound. The ultrasound showed an very enlarged prostate and prostate calcifications. He called with the result of the urine sample ... no bacteria. But put me on Bactrim just in case. SECOND ERROR: Had he looked at the susceptibility report, he would have seen that I had ESBL ecoli and I still had an infection. Bactrim does not work against ESBL ecoli bacteria. I was also put on alfusozin, which is supposed to help, but did nothing.
I steadily got worse until not only was it painful to urinate, it was painful to sit down. And orindary pain killers were completely ineffective. I was taking boatloads of ibuprofen (which usually works great for me) and it did nothing. Why? I had a raging infection that wasn't being treated with the right antibiotic. In video conferences (remember, this was early in the COVID pandemic), I would prod the doc into trying some things I had read in medical journals, but he ultimately did nothing. I decided to see another urologist, this from a big time hospital rather than a local practice. By the time I actually saw the new urologist, it had been 8 more weeks.
Before I could see the new urologist, I saw yet another. This guy is nationally known and does not take insurance, so I was able to get an appointment immediately. He did a more complete exam, said he also thought I had non bacterial prostatitis, prescribed finasteride and some other drug that my insurance refused to pay for. While I was considering what to do, I saw the third urologist
Third urologist looks at the data and notes I am on an antibiotic that has no chance of working. He notes there aren't a lot of antibiotics that work against ESBL ecoli and also penetrate the prostate, but thought Augmentin (originally prescribed in the ER) was worth a try, but for 6 weeks instead of 10 days. I started that and immediately felt much better.
I went off the augmentin at 6 weeks, and a week later, the urinary pain returned. Another urine test showed the ESBL ecoli again. He reluctantly put me on Augmentin for another 6 weeks. I immediately got better. No urinary pain, and the sitting pain was better ... tolerable. At the end of the second 6 weeks, I went off the Augmentin. The symptoms returned, so yet another urine test. This one was negative(!). Not knowing what to do next, the urologist did a cystoscopy (not fun, trust me) and noted that the prostate was "friable" ... that is ... irritated.
Bad news. But over time, the urinary pain went away and it became easier to sit down. Yay! Antibiotics are also anti inflammatories, so perhaps that was it.
All went great until 5 months later. On a ski trip with the family, the infection came raging back. Urinary pain, pus, and feeling completely crappy.
Went to the ER when I got home, and you guessed it ... ESBL ecoli was back. Went back on the Augmentin and back to the urologist, and after a second opinion from another urologist, decided to have a TURP procedure. The notion was to get rid of the calcifications that might be harboring the bacteria. Studies I read made it look like if they were all removed, the infection disappeared 80% of the time. The TURP was a green light laser procedure, and was not fun. Huge catheter. Small but real chance of impotence. Smaller chance of incontinence. But if it ended the infections, it would be worth it.
After I recovered, peeing blood and chunks for a couple of weeks, I went off the Augmentin. Somewhere along this time, third urologist said he did not get all the calcifications out. Some were too deep to get with the green light procedure. ERROR THREE: Why did we do that procedure instead of another that could have got all the calcifications? Within a week after going off the Augmentin, you guessed it ... infection came raging back. ESBL ecoli again.
All this time, I was doing my own research into the issue. It's pretty discouraging as prostatitis is difficult to treat, harder to cure, and when you have an antibiotic resistant strain of a bacteria, there are not a lot of options. I did note some antibiotics that had been tried in small numbers of patients with reasonable success, notably fosfomycin. It works differently than the others and was once used to treat female UTIs. It penetrates the prostate well and does work against ESBL ecoli ... at least most of the time.
So when I went to the urologist again, I asked about the fosfomycin. He instead referred me to an infectious disease doc. She did a urine sample, did a susceptibility study, and determined that the fosfomycin was a good choice. Most of the studies had people on that for 6 weeks every other day or 12 weeks every other day, but since I tolerated it well, I had it for 12 weeks every day. The infection improved.
So that is where I am now. The protocol is that they consider it a recurring infection if it recurs before 6 months, and a new infection if it recurs after that. At this point, I am at 7 months without new symptoms. Still not sure if I am cured. If I am not, the next step is likely an enucleation of the prostate, and if that doesn't work, complete removal, like what they do for prostate cancer. Removal does cure it ... almost all the time, so it is nice to know that option is there, even if there is a very high chance of impotence and/or incontinence (thankfully, the TURP procedure was not a problem in those regards).
I am STILL dealing with what all those antibiotics for so long did to my GI system. That also seems to be improving, but at an almost imperceptibly slow rate. I can now sit in a soft car seat for long periods. Riding a bike hasn't been a problem, fortunately.
So anyway, that's it. Now you know why I gave the advice I did. Be a squeaky wheel. At 69, there is no way you should be so disabled from something like this. Good luck to you!