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Dealing with chronic prostatitis - can you help?

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User

Posted 26 Aug 2023 at 16:52

Hello all,

In June 2022 I underwent a prostate biopsy and was diagnosed with prostate cancer (Gleason 3+4). Since that procedure I have suffered from significant discomfort and sometimes a worrying low urine flow because of swelling. As of yet, I've managed to avoid a trip to A and E to have a catheter fitted. I'm on active surveillance and have seen the urologist 3 times since the biopsy. They ordered an MRI, blood and urine tests, a Stamey test, and most recently an ultrasound. The long and the short of it is that I apparently have chronic prostatitis which is causing my prostate to swell thus leading to all the problems. The MRI suggests that the cancer is fairly small and localised and not the cause of the swelling.

Along with the Tamsulosin that I take daily, I've been given antibiotics (Ciprofloxamin) on 3 occasions , firstly at a lower dose 250mg/12 h (for 7 days) and then double that. I'm presently on the third round. I get the feeling that this antibiotic, its dosage, or the length of treatment is not enough to really beat the infection. It certainly helps and the symptoms improve for a time but they always return. Do any of you have experience of this? Can you suggest another antibiotic that I can ask to be given, or anything that might help? Furthermore, this antibiotic can have secondary effects if taken too much, apparently it can lead to ripped tendons for some reason. Also, having taken it so many times, I imagine there's a chance of antibiotic resistance.

If any of you could give me any suggestions that I can pass on to my doctor, I would be most grateful.

Many thanks,

Simon R.

User

Posted 26 Aug 2023 at 18:45

Did the Stamey test show that you have bacterial prostatitis, and did culturing it indicate the bacteria is sensitive to Ciprofloxacin, or was the Ciprofloxacin just given trial-and-error style?

User

Posted 26 Aug 2023 at 22:13

I suffered from prostatitis, BPH and generally all sorts of urinary problems - never properly diagnosed because urologists could not put their finger on (inspire of many DREs, tests, antibiotics etc etc) what the issue was. But 12 years ago my PSA showed a big jump, I was diagnosed with cancer (Gleason 3+4, 4+3) which was well contained with clear margins. That encouraged me to choose prostatectomy with the added hope that if I got rid of my prostate my all other urinary problems will go as well (although my urologist did not promise me that). And that is what happened! I have been cancer free and my PSA has remained steady at <0.003 since surgery with no prostatitis symptoms. I have a minor issue with urine leakage when sexually excited or when I orgasm. My nerves were saved but I suffered from age related ED. We decided to use VEDs to solve that problem and our intimate life is a new normal which we have both embraced with many benefits. I am in no way suggesting that you go for surgery but something to think about and discuss with your urologist and other specialist. If you wish to follow our story follow the following thread: Good luck and be positive.

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 27 Aug 2023 at 09:17

Thanks for getting back to me, Andy and Pratap,

Andy, regarding the Stamey test, apparently no infection was found (I should say that I'm presently in Spain and interacting with the medical staff here can sometimes be a little difficult. Luckily you can download all of your test results from the Health Service app.). The only thing mentioned was that urogenital flora was detected in the seminal liquid but my GP said that was at normal background levels - apparently, no bacterial culturing was carried out. I realise this might cast doubt as to whether I have chronic prostatitis (CP); nevertheless, the only way I've been able to fight the swelling and reduced urine flow is by taking a course of antibiotics (it's worked twice before), thus suggesting a bacterial component to my problem. Anyway, my next urology appt. isn't until late October so I've been wondering if there is another antibiotic that might be effective against CP, or if I should be doing something else.

Pratap, regarding the radical prostatectomy (RP), I think the next time I see the urologist I will reluctantly ask him to go ahead with surgery (originally I was offered Active Vigilance, Radiotherapy or an RP, and I chose AV). My main concern re. surgery is if there are post-op urinary infections. I know it takes months to regain all function and that a certain percentage of people are unlucky with longer-term ED or incontinence. My dread would be to have repeated urinary infections requiring multiple courses of antibiotics, and the harm that can do to one's body overall. On the plus side, I'd be able to exercise properly again at some point - since the biopsy, any strenuous activity has led to swelling, discomfort, and affected urine flow.

The only other thing to mention is that I'm back to live permanently again in the UK when I'm 60 (in just over a year). I had hoped I could stay relatively stable on AV until then so that I could face any surgery back at home in Oxford, where I'm told the urology dept. staff are really good. However, after this current course of antibiotics, I fear I will be dealing with debilitating CP again relatively soon and be forced to ask them to intervene surgically.

Thanks again for your input, any advice you have is very much appreciated.

All the best to you,

Simon R

User

Posted 27 Aug 2023 at 18:55

So they collected expressed prostatic fluid, and then never cultured it? This means you don't know if you have bacterial prostatitis, which makes the test rather pointless. Of course, you shouldn't be having antibiotics either, without knowing this, and knowing the bacteria are sensitive to it. Having had 3 lots of Cyprofloxacin, any bacteria remaining in the prostate will possibly be resistant to it. There aren't all that many antibiotics which can get into the prostate, so you don't want to burn through them by trial and error creating resistant bacteria.

Most antibiotics are also anti-inflammatory, so they can generate temporary relief even if they aren't killing the bacteria.

Edited by member 27 Aug 2023 at 19:06 | Reason: Not specified

User

Posted 27 Aug 2023 at 22:49

I suffered from prostatitis off and on for some years as I side above before I was diagnosed with prostate cancer. I had my prostatic fluid tested a couple of times with negative results. My urologist told me that sometimes the infection is very deep (!) and difficult to cure! After a few appointments with him I gave up because he simply wasn't interested anymore. As I said earlier I had a hypothesis that if the prostate is removed prostatitis disappears with it and hopefully the cancer too. I am not claiming that my experience verifies my hypothesis, as always in this sort of situation more research is needed for evidence. There is an interesting book by Tim Parks who suffered from pelvic pain for years. It is quite interesting to read although somewhat depressing: 'Teach Us to Sit Still:A Sceptic's Search for Health and Healing'

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 28 Aug 2023 at 08:33

Hi Andy,

Again, thanks for your rapid reply and your advice. Regarding the Stamey test, yes, it does seem to have been pointless although maybe there was no bacterial infection present and I have abacterial chronic prostatitis (I've found it mentioned in the literature). Of course, you're right, whatever the case, I shouldn't be taking antibiotics if the bacterial strain is unknown or indeed there's no bacteria there. The anti-inflammatory properties of antibiotics that you remarked on is an interesting point. I assumed there must be infection there because the AB course helped each time, perhaps it wasn't their antimicrobial properties that were having an effect.

I fear that after I finish the Cipro course in a couple of days, the swelling will soon return and I'll be faced with my urine flow closing up again. Maybe I should just let it happen this time and go to A+E. It might get me access to the urologist and more tests rather than trying to wait for my next appt.

Anyway, thanks again. You've been giving me your advice and I haven't asked about your situation. You seem well-versed in matters of the prostate. Are things alright with you? I hope they are, and that you haven't had to endure too much.

All the best,

Simon R

User

Posted 28 Aug 2023 at 20:30

I wasn't even aware of prostatitis until recently after diagnosis of T2.

Since the biopsy (about 5-6 weeks ago) I have had pain in the penis, testicles, bum and general burning sensation inside the middle section, I guess prostate area. Its not excruciating, but there all the time. I cant ejaculate hardly anything, barely a quarter of a teaspoon, although the crimson blood colour has now subsided. A basic urine check at the GP was clear, which seems to be common from what others have said. Only more in-depth testing could identify if this is possibly prostatitis.

Makes me think because around my late 40s, I noticed significant volume decrease in semen, almost dropping off a cliff. I had 2 long spells of quite bad testicle pain. Both were examined for the usual lumps etc, and had ultrasounds. The diagnosis at the time was possible harmless cysts.

I do wonder if that was prostatitis back then or the start of cancer. Have others experienced such a major drop in volume in that way? At the time I just put it down to aging process, but I had much larger volumes prior to those periods.

User

Posted 28 Aug 2023 at 23:05

Hello Simon,
I had prostate cancer and had radiotherapy 4 years ago, with hormone therapy. My treatment is finished now.

I've never had prostatitis and I'm not a clinician. One of the prostate support groups I run has 3-4 resident urologists, one of whom specialises in prostatitis, so I get to hear a lot about it. The next FOPS meeting is Wed 6 Sep on Zoom - you are welcome to join and can then ask more about it. (I'll post here about it next weekend.)

Only about 20% of prostatitis is bacterial, although in the case of prostate cancer patients it's probably higher as it can be caused by some of the related procedures. You are right that bacterial prostatitis can be difficult to sample, because it commonly ends up blocking off the area of the prostate it's in, so no sign appears in urine or semen, and that's why expressed prostatic fluid is necessary to get samples and culture it. If it is bacterial, it can also help to have prostate massage by a urologist while on the antibiotics, to help them get into the area of infection. Trouble is, very few urologists actually have detailed knowledge and successful experience of treating prostatitis.

Edited by member 28 Aug 2023 at 23:08 | Reason: Not specified

User

Posted 28 Aug 2023 at 23:12

Originally Posted by: Online Community Member

Have others experienced such a major drop in volume in that way?

A significant drop in semen volume or change in consistency can be prostatitis or prostate cancer. It can probably be other things too.

User

Posted 29 Aug 2023 at 10:18

Hi Pratap,

As with you, I have been losing hope that a cure for what appears to be "deep" chronic prostatitis will be resolved in my case. If one good thing has come from it, it has made me accept that a radical prostatectomy might not be such a bad thing after all. Anything to get rid of the discomfort that has made it impossible for me to exercise fully and has given me many worrying moments when it seems my urethra is totally blocking. .. One thing, surely when the prostate is removed, all the prostatic tissue has gone and the inflammation will disappear - is there a reason to think otherwise?

All the best and I'm glad that your health has improved following the surgery.

Simon R.

User

Posted 29 Aug 2023 at 10:31

Thanks Andy, that's really interesting. As I said to Pratap, this last year (since the biopsy) has been such a nuisance that I've been thinking of asking my urologist over here for a radical prostatectomy when I see him at the end of October. I used to be really fit for my age, doing strenuous exercise and running. Now if I attempt to do so, my whole pelvic area swells within hours and it's almost impossible to pee, as though the movement causes friction in the area which leads to inflammation.

I'd be very interested to join your zoom call on the next occasion you have a FOPs meeting and would be grateful for a link to it when available.

It sounds like your prostate problems are under control and I'm happy you managed to avoid an RP. Wishing you continued good health and thanks as always for you excellent advice.

All the best,

Simon R

User

Posted 29 Aug 2023 at 11:32

Originally Posted by: Online Community Member

One thing, surely when the prostate is removed, all the prostatic tissue has gone and the inflammation will disappear - is there a reason to think otherwise?

That should be the case. Of course, prostate removal can cause strictures as a side effect, blocking the urethra, as well as other side effects, so it's not a risk-free procedure by any means. The risk of removal is usually only considered for prostate cancer.

Also, if you have bacterial prostatitis, I think they require this to be resolved first, to reduce risk of spreading infection.

There's also chronic pelvic pain syndrome, and removing prostate might have no effect on that. So you'd need to be sure the cause of the pain is prostatitis.

Edited by member 29 Aug 2023 at 11:34 | Reason: Not specified

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