Prostatitis symptoms, pain, depressed

Hi Roger,

I can't help you much directly. Prostatitis can be completely painless, or can manifest as pain somewhere else, because the brain's map of the body which it uses to work out where pain is coming from doesn't have representations of some of the internal organs such as the prostate, so pain there can get referred to somewhere else (penis is common).

There are very few urologists who specialise in prostatitis, but we do have one of them in The FOPS support group. I'm just setting up our next support meeting which will be over Zoom, almost certainly on Wed 2nd Sep, 7:45pm for 8pm start. I will post in the FOPS thread nearer the time. If you join the Zoom session, you could ask your question there.

Edited by member 20 Aug 2020 at 14:43  | Reason: Not specified

Prostate produces the clear fluid component, prostatic fluid as you say, mainly consisting of PSA. The largest part of the semen, over 50%, is the thick milky component from the seminal vesicles. Very little comes from the testicles.

If you are only seeing clear fluid, this might suggest that the ejaculatory ducts which carry the seminal vesicle contribution through the prostate could be blocked. This could be prostatitis, BPH, or prostate cancer, but I'm not qualified to drill down into these. You really do need to go and have a proper investigation in urology, and urology departments are open now. If flexible cystoscopy isn't possible, then you would normally have a rigid cystoscopy under general anesthetic.

A shame you didn't get to ask at The FOPS. I'm aiming at Oct 7th for the next one. If you want to give me a question beforehand, I can ask that it is specifically addressed. We probably have the most expertise you will find on prostatitis in the country, combined in a urologist who loves doing complicated investigations. You could ask to be referred to him at UCLH where he works on the NHS.

Hi, just an update  on where I'm at. I had a rigid cystoscopy with a biopsy on 21 Sept. I was worried about it making things worse but it was OK. It was very painful to pee for a couple of days and there was quite a lot of blood but they were the only effects.

The findings indicated "DRE: 25 mls, cT0 prostate, no mass, Normal urethra, non occulsive prostate, thickening triogone, looking inflammatory, ?, TCC, photo images. Both UOs seen and normal. No other lesion or TCC seen in bladder". The biopsy didn't show anything up. I had a phone consultation with my urologist this morning who said there was nothing anatomically wrong with me, so the problem is physiological. He is going to arrange a urodynamic test (which I'm worried about as I think having a catheter in would be very painful for me). I asked for a diagnosis and he said "pelvic pain syndrome" which is what he said back in June.

I asked if I could have a semen analysis as when I orgasm it only produces a very small amount of clear watery fluid - very different in consistency and amount from what it was like before the pain began. He's agreed to this. He's also going to make an appointment for me to talk to the "pain team" which will probably mean they'll put up my pregabalin dose. The constant feeling of wanting to pee, plus pain is still there all the time although it's around a 4 out of 10 (in the first month it was 7-9 out of 10). My testicles haven't been painful for a few weeks so that's something. I've been taking 225mg of pregabalin for several months so I suspect that's helping to dull things. I've been refraining from sex/masturbation as the pelvic pain tends to be worse the day after for a few days.

I asked why I was only put on 2 weeks of antibiotics and he said that wasn't for cases like mine. I'm feeling really that there isn't much they can do to make me better so the best I can hope for is effective pain medication.

In answer to the previous poster's question, I was initially given ciprofloxacin but I came out in a full body rash so was switched to trimethoprim. I don't think it made a difference though.

Edited by member 13 Oct 2020 at 10:40  | Reason: add more info

Did they find anything from your mpMRI scan Trionic?

I had a semen analysis and semen culture done. I don't know if the testing labs are all busy with COVID tests at the moment but none of them were answering their phones and it took several days to get through to one to arrange an appointment and then a week before anyone could fit me in. Never thought I'd be shown into one of those rooms with a drawer where there were two plastic folders with magazines in, marked "heterosexual" and "homosexual". Giving the sample was incredibly painful (resulted in a kind of spasm-like pain in my rectum for some reason - no idea why - it's the first time that's happened - and that part of my body had nothing to do with what I was doing!) and I had to go to sleep for 2 hours when I got home. At least I produced something which recognisably looked like semen this time - in the past few months it's been a tiny bit of clear watery fluid. I got the result back 6 days later to say everything was normal.

I had a urodynamic test booked last week. I wasn't able to go through with it. When the nurse started to put the catheter down my urethra the pain was agonising and I involuntarily pushed her hand away. She'd put on plenty of the numbing gel first and waited but it wasn't going to go in. I have a very tight urethra and also I think I'm much more sensitive down there than average. The nurse said it was OK and unlikely to have showed anything up. My urologist is meant to be seeing me again in 4 months.

I listened to a podcast at the Confessions of a Prostatitis Sufferer blog yesterday (#5 with Adam). I found it interesting to hear two men talking about their situations (this is a very lonely condition and even when I do talk about it, which is rarely, it's with people who don't know what it means and I end up using lots of euphemisms to avoid embarrassment). One thing that struck me was how Adam said he'd spent ages on the internet looking for answers. I've been doing the same in the last couple of months and it's not getting me anywhere. The more I look, the more confusing it's getting. So many people seem to have "the solution" whether it's a certain type of stretching, internal massage, diet change, painkillers, antibiotics, meditation, positive mental attitude, supplements. Just feels like I could spend my life going from one "answer" to the next and all it's doing is getting me to focus on my pain more. I'd like to add another "answer" - perhaps, if we do get better, it's because this condition goes away on its own and there isn't much we can do except wait it out and try to make ourselves as comfortable as we can or learn to live with it. My pain has decreased by about half since this started in May and I don't think that's all due to the pain medication (I'm not sure the pain medication is having any effect...)

Speaking of which, at this point I'm waiting to hear from "the pain team" about changing my pain medication. I'm on 225mg pregabalin. In a book I'd found online during my many searches, called Chronic Prostatitis/Chronic Pelvic Pain there's mention of a study where men were given 300mg pregabalin as a starting point and increased to 600mg if that wasn't effective. So I'm probably on the wrong dose (they started me on 150mg and I went up to 225mg myself after four phone appointments with my GP who was very reluctant to up the dose). If that doesn't work, I'm going to try nortriptyline (a relative of amitriptyline but doesn't have as many side effects apparently).

So, the following things help for me: not masturbating. Lying down. Sitting on a chair bent forward with my elbows on my knees (there's no pain at all in that position though it's not good for the back). Mentally distracting work or socialising. My best day in the past 6 months was when I was cleaning a flat I own after a tenant had moved out. I don't know if it was the activity but the pain completely went and stayed away for the rest of the day. I've tried the stretching exercises from Youtube ("Reduce male pelvic pain with these 10 stretches") but they gave me that "sitting on a golfball" feeling afterwards so I'm not sure that they're doing me any good. If the pain gets unbearable, I try to take a nap. I know it's not good to do that a lot because it disrupts your sleep but I'm finding I've been more tired than usual since this started anyway. I try to get in 10,000 steps of walking each day and I'm going to gradually try to incorporate more strenuous exercise into my life (having COVID in March really knocked me for six).

I'd be interested in hearing from any other sufferers about how they manage to get through each day with their pain. How do you "live with it"? Is just not thinking about it the best thing to do? What do you do (that helps) if it gets really painful? If you think about your condition, is there a way of thinking about it that you find helpful? Any tips would be welcome. 

Something I'll mention is that our consultant at The FOPS has said bacteria often don't show up in semen or urine samples. Infected areas of the prostate can get blocked off. The only reliable way to culture for bacteria is from expressed prostatic fluid.

By the way, next FOPS will be 2nd December. I'll update the FOPS thread nearer the time.