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Prostatitis symptoms, pain, depressed

User
Posted 20 Aug 2020 at 11:41

Hi, this is my first post to the group. I'm 48 and started experiencing an occasional ache in my testicles in January 2020, usually after sex or the day after. STD tests didn't show anything and I was given a 2 week course of doxycyline which didn't stop it. I caught corona virus in March and was quite ill with it for about 10 weeks - not enough to be hospitalised but I had gastro-intestinal problems, acid reflux, fatigue, high blood pressure, light-headedness, swollen ribs, chest pains and loss of taste/smell (Google "long hauler" if you haven't read about those kinds of symptoms with corona virus). I was prescribed antibiotics for a suspected secondary infection (which didn't help and possibly made my stomach problems worse). My partner also caught corona virus and was very ill with it - hallucinating at one point. I thought we both might die and it was a very stressful time. I'm pretty much over it now - still on medication for acid reflux, but slowly reducing the amount. 

At the end of May, just as I was getting over the corona virus I had sex with my partner and the pain in my testicles got more intense and frequent. I examined my testicles and the pain on touching them was agony. I experienced very bad pain with them daily for a week - it was difficult to walk at times. Then the pain stopped but a couple of days after that I woke up needing to empty my bladder although after doing so, the feeling of a full bladder was still there and has been there pretty much ever since. I had a private consultation with someone on Harley Street who prescribed solifenicin (Vesicare) which I took for around 10 days but over that time the painful feeling in my bladder worsened. I was in agony and ended up in hospital for 3 nights. I was also prescribed Tamusolin but it also gave me side effects so I stopped taking that too. In hospital I was given morphine which didn't take the pain away although I did manage to fill up 3 of those cardboard portable-loo things they give you within about an hour of having the morphine. I suspect the solifenicin may have given me water retention which made things worse. I had a scan which showed my prostate had some calification although didn't look enlarged, and when the doctor did a DRE he said the area didn't feel "boggy". Another test showed I had a "weak flow" and a low capacity bladder. I was told the next step is a cytoscopy but the NHS aren't doing those at the moment so I'll have to wait a long time. I was discharged with 2 weeks of antibiotics (which don't seem to have made a difference), and a prescription of Pregabalin for the pain.

During June/July the pain in my bladder/pelvic region was constant and difficult to bear. In the last month it has subsided a bit, although it's still there pretty much all the time and I still get the occasional ache in my testicles and penis. I still want to go to the loo all the time but am trying to limit it to every couple of hours as otherwise hardly anything comes out. I've found that walking or driving helps and maybe the Pregabalin is helping too. I'm taking 3 tablets a day (225mg in total) and a bit scared to up it as I've read horror stories about addiction and withdrawal. Sitting in an armchair makes the pain worse, so I have to sit on a dining room chair or office chair. It also hurts around my waist to wear my normal size clothes so I'm wearing clothes 2 sizes larger than I normally wear. Having done some reading online I'm avoiding caffeine, tomato,  fizzy drinks, citrus fruit and spicy food (not sure if that makes a difference or not). 

I'm doubtful that corona virus caused this, although maybe it helped things along, or maybe the stress of having it played a part. I definitely think it's connected to the pain in the testicles that came earlier. I haven't had a diagnosis so I don't know if this is prostatitis or interstitial cystitis or something else. I got the impression that the doctors just wanted me out of the door. I'm concerned that the cytoscopy, when I finally get an appointment for one, will find nothing and make the pain worse - my urethra is very narrow and an attempted cytoscopy about 20 years ago when I had kidney pain had to be aborted. 

Do my symptoms sound like anything that anyone else has experienced? Can anyone recommend a way forward? So far I've spent £1000 getting private tests done but feel it didn't result in much and I have limited money. I'm trying to stay active and go about my life as normal. I have a supportive partner but the situation is really getting me down and it feels like there'll be no end to it as the doctors don't seem to have a clue how to make me better. Reading about people's experiences online and advice from medical websites doesn't give me much hope either. 

User
Posted 20 Aug 2020 at 14:35

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

User
Posted 04 Sep 2020 at 09:02
Thanks Andy, I listened in on the FOPS Support Group on Wednesday but didn't get a chance to ask a question as I had to leave before the end.

I have a cytoscopy booked in a couple of weeks. I'm nervous about it for reasons mentioned in my last post but will post with the results once I've had it.

Since this began, my ejaculate has been about 10-20% of the normal volume and it is clear and watery, as opposed to white and thick. I am only ejaculating about once a week as it makes the pain a bit worse for the next 24 hours or so. This amount/colour/consistency isn't normal for me and I'm wondering if it's just prostatic fluid coming out and the semen is getting blocked somehow or my testes aren't producing it. This all began in January with my testicles hurting, and I'm still getting an aching feeling in them, on and off. I'm not sure how that relates to a constant feeling of wanting to go to the loo and pain in the pelvic region. I was initially prescribed antibiotics for the pain in my testicles for 2 weeks but that didn't seem to have any effect. Does this sound like a symptom of prostatitis?

User
Posted 04 Sep 2020 at 13:45

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.

User
Posted 13 Sep 2020 at 22:39

Hi Roger

I've just joined and have had non bacterial prostatitis for 4 years. Re your ejaculation. I have had the same in a flare up. Little comes out as the urethra is restricted. Most of it will go into your bladder i was told. Have you had bladder scan and testicular scan?

I was also told by consultant urologist that pain from prostatitis can be testicular. At the moment I have pain in penis and in rectum. I've just started Tamsulosin which is helping during this unwanted flare up which is the worst since I've had the condition.

By the way, which antibiotics were you given?

Edited by member 13 Sep 2020 at 22:40  | Reason: Not specified

User
Posted 13 Oct 2020 at 10:38

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

User
Posted 14 Oct 2020 at 00:19

Hi Roger,

It's good news nothing untoward has been found in the prostate. However, I can see how frustrating it is not to have an 'answer' for the pain and continual discomfort.

Thanks for the name of the antibiotics. I want to avoid cipro due to the rotten side effects.

I had my mpMRI scan yesterday which should show if I in fact have two issues...prostate  and internal piles or just prostate. Anal pain is dreadful when it's bad but DRE finds nothing and does not cause any discomfort....neither does prostate exam cause discomfort.  I'm due a semen analysis too soon.

Let us know how you get on.

 

 

User
Posted 16 Nov 2020 at 10:08

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. 

User
Posted 19 Nov 2020 at 01:00

Hi Roger,

Sorry for the delayed response. My mpMRI scan was clear although the consultant did say there was sign of infection - nothing sinister though which is a relief. Semen and urine cultures were clear too despite the previous green  blobs in my semen. I guess the infection had gone. 

As the symptoms seem to have gone, I was told to get the same antibiotics as you from my GP, should it come back.

I've not tried to ejaculate since giving the sample though as my anal pain is still present. It actually sounds like your testicle pain and it always seems to be there...just some days less so and others more so. GP has thrown all sorts of creams and suppositories at me. I think I actually had two things going on at the same time...the prostate issue and quite possibly an anal fissure although all the DREs have not hurt. I’ll be seeing a colorectal consultant Monday and hopefully get a scope up there to see what's going on.

Interesting that the cleaning of your flat eased your symptoms. It could well be a pelvic floor issue. I've watched some of the same videos too. I think you can go to practitioners specialising in pelvic floor 'massage' which could be helpful.

Stress doesn't help at all. Be careful re the exercise. When my prostate issue started four years ago, I found that even lifting half the weight I used to, I'd get a throbbing up my bum and reduced ejaculate. So for four years  I've been lifting less than half the weight. Hardly done any exercise since August after the flare up especially with the anal pain. Mentally bad for mental health...so it just feeds the stress etc.

I'm unsure if this site supports private messages but I'd be happy to chat if you like.

Cheers,

Al

 

 

 

User
Posted 19 Nov 2020 at 07:27

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.

User
Posted 19 Nov 2020 at 07:47

Hi there all,

Well after a prostate behaving for three years, I carried on cycling etc etc, low and behold my annual checkup for PSA went astray...so being a nurse I suggested I arrange my own sample and get it checked. No symptoms, just wanted to keep on top of it.  in the past it had jumped about, 3.2-5.0 onto 7 back to 3.etc etc. Id had a rectal biopsy under local..not pleasant.Then MRI?? all arse about face, never mind.

Result negative, just large prostate no symptoms.

However, this PSA, one about two months ago 13.2, I had been cycling 100 miles plus a week, covid swabbing people in their homes etc. Anyway, did a second 19.4..well I knew that meant something was erupting in some shape or form. They were good and on it. In for second MRI  I had appt with Urology Spec Nurse [who was a colleague, she was straight to the point which is good] PT RADS Grade 4 lesion left side. Now awaiting a Trans Peri Biopsy this saturday, so Self isolating until the, results in 2 weeks, but I suspect it will be a removal of Mr P. So, what Im asking is whats the best option? 

As a nurse, Ive looked after a lot of urology patients over the years, ive seen great outcomes from robotic removal via laproscopic surgery. In for a day and out as long as all goes well etc.

Hioefully you guys can shed some light about recovery time over the following 3-6 months?

I'm coming up 62, I keep fit, no meds, ailments etc.

Cheers 

User
Posted 20 Nov 2020 at 03:19

Eddy,

I think you need to wait for the biopsy results, but I would suggest you start your own thread with that post, and then delete it here from a prostatitis thread.

 
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