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 Advice plz or suggestions 
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Advice plz or suggestions
Hi everyone, go gentle with me. I have had some kind of condition since last october and been on nhs waiting list for urologist since December.

Last october when my issues happened i had pain in my ball sac area but it wasnt my actual balls that where sore it felt it was from the tube connecting to them. Had my balls checked a few times and got put onto anti bios. Was back and forth to the docs and then they decided I possibly have epididymitis so I said ok at least thats not to serious. So anti bios where changed back and forth between cipro and Trimethoprim. So thats been going on for a few months, did the anti bios work, I honestly couldnt say yes or no. Initially the pain was in my ball sac as if i had been kicked in the balls, my left groin was sore and there was pain on my left quadrant, felt really tight there like a golf ball.

So I get sent to hospital for ultrasounds and both are fine.

So i go back to my docs about 1 month ago to moan about urology waiting time and to say that im still not better. My symptoms have changed a bit. I was always having issues during the night urinating so the doc put me on Tamsulosin which has helped for during the night. My back is pretty sore, my left hip is sore and my left disc area is sore. I still cannot lie on my front in bed because of the pain, not as bad as it was but still unable to lie on my front. During the night I will randomly get what i think is burning pain around my prostate area and bladder, this can come and go and lasts about 30 mins to 1hr. Other sympton is that i can still feel something in my left quadrant, below the belly button and to the left near my groin.

Finally, my urine result at the start and recently had blood in them thats not visible to me and the doc checked my protate which he said was fine.

The doc thinks its maybe prostatitis but only urology willl confirm that but I think its def related to my prostate whatever it is as the Tamsulosin has helped me during the night. When I lie down its at its worst apart from my hip and back which is sore most of the time. The only other thing I can add is that I have a sore left leg also so im not sure if thats sciatica or if its to do with my prostate issue.

Im very worried incase its cancer and i have been waiting on list since Dec, from my symptons do you guys thinks its Prostatitis.

Thanks for your time.


Sat Apr 15, 2017 3:53 pm
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
To update, my back and groin are really sore aswell as my leg tonight. I think it's my pelvis, from low back disc area round to front and groin is really sore, gets any worse I will be struggling to walk. 4 months on a nhs waiting list, disgrace.


Sat Apr 15, 2017 6:40 pm
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Joined: Sun Oct 16, 2016 9:59 pm
Posts: 116
Post Re: Advice plz or suggestions
Hi tolme, & sorry you're having such a tough time.

One thing you can do while you wait for urology is to ask your GP about a semen culture (and sensitivity). Both Cipro and trimethoprim penetrate the prostate well, but duration of therapy is typically a month to 6 weeks for effective treatment. A lot of pathogens are resistant to these meds now days, or you may have developed a resistant bug if your duration of therapy wasn't adequate.

In order for your uro to provide effective treatment, he'll need to know what bug you've got, and whether or not it is resistant to his favorite therapy, and a semen culture and sensitivity is the only way to determine this. You should be off antibiotics for a month to get a good culture, so if you've been on anything besides the Tamsulosin recently, wait 30 days after you stop anti-B's before you do your semen culture.

The testicular ultrasound should have detected cancer if there was anything in your testes. Don't know how old you are, but prostate cancer is rare in those under 40-50 years of age. Your GP might also order a PSA test to evaluate prostate cancer possibility, and if you're over 50, your uro will want to see this also.

Get these tests done, & you're uro should be ready to start treatment immediately if you go to him with the results from these tests in hand. If you get a positive culture and sensitivity, your GP may even be able to treat this, as protocols are pretty standardized once you know what you're dealing with.

Hope you get to the bottom of this soon, & Best of Luck!

_________________
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth
Sherlock Holmes


Sun Apr 16, 2017 2:49 am
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Joined: Fri May 08, 2015 2:59 pm
Posts: 524
Post Re: Advice plz or suggestions
Hard to say what is going on, I hope you get to see a specialist soon.

It actually sounds a bit like sciatica, I'm recovering from that. Have you gone to see a local physio? Osteopaths and chiro can be quite good for that kind of thing too.


Sun Apr 16, 2017 5:55 am
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
First of all I'd like to say thanks for getting back to me.

Ok, I have already had urine and psa tests done. PSA test was fine and Urine came back as non bacterial.

Prostate was checked and it was fine, ultrasound done on balls, kidneys and I think bladder and nothing.

Regards to Sciatica, I do suffer from that as I need to change bed and thats another issue trying to find a suitable bed. My back and leg pain could well be sciatica but it doesnt explain my issue urinating once I lie down, or my issue that i cannot lie on front because of pain below belly button down towards penis. Also I can only sleep on my back and at random times during the night i will get pain from my bladder or prostate, its like a burning sensation i would say. I would say that apart from the back pain I'm 90% better than when this started, if I could lie on my front with no pain from bladder/prostate down to penis then that would be perfect as I can work on the back issue if its Sciatica. Another thing is that I seem to be tired alot or not feeling great, I cant work out if this is down to not sleeping great or just whatever i have is making me feel like that.

Also right from day one of this I've had the thing next to my left groin, below belly button, just above penis and to the left.

I've been on the waiting list for 4 months and they wont move me forward as they dont consider it urgent. Regards to cancer I was more concerned about bladder cancer than testicle as I know its not a testicle issue.


Sun Apr 16, 2017 4:10 pm
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Keep forgetting to add this, I had my urine test last October and another about 3 weeks ago, both contained blood, this is not visible to me but came up in the test.


Sun Apr 16, 2017 6:20 pm
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Joined: Sun Oct 16, 2016 9:59 pm
Posts: 116
Post Re: Advice plz or suggestions
Urine cultures are notorious for false negatives, particularly if they are done after the first round of anti-B's. The anti-B's knock out the infection everywhere but inside the prostate, which is encapsulated and difficult to diagnose and treat.

A mans plumbing has "valves" that keep urine out of the prostate gland, and can also help infections hide in the prostate. Semen/ejaculate is largely made up of prostatic fluid, so if you've got infection in there an ejaculation should pump infected fluid out of the prostate where it can be cultured. A semen culture, done at least a month after taking any anti-B's is your best bet to find a bug that may be hiding/festering in your prostate.

Semen is just as cheap & easy to culture as urine, so there's no reason why your GP would not want to order this lab. I had negative urine cultures too, but a semen culture turned up haemophilus bacteria.

Sometimes urine "cultures" simply involve a dip-stick test for nitrates in urine. This is not a true culture & sensitivity, but it is dirt cheap, which is why a lot of doc's test urine for nitrates, rather than doing a proper culture & sensitivity on semen.

Hope this helps.

_________________
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth
Sherlock Holmes


Sun Apr 16, 2017 10:36 pm
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Was at the docs today as Im still waiting to see a Urologist. He's gave me more prostate pills as he said they take around 2 months to work although strangely they worked on the first night I took them and the following week. They seem to have stopped now as I was up 4 times lastnight and im shattered. I also explained those 4 times I woke up I had an erection everytime which made it worse when needing to pee. He said its look I'm having errections so I'll guess I'll go with that. The prostate pills on general seem to have made the blood flow so much better, penis is double the size like the good all days when not erect.

I can almost lie on my front, can do this for a few mins and then theres pain from bladder/prostate and need to go onto my back. So the wait goes on.


Wed Apr 19, 2017 8:10 am
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Actually begining to think this is not Prostattits, from day from I've had a pretty sore pain between belly button and penis to the left hand side towards my groin. It seems to go into spasms or something especially during the night, this also hurts my groin and left hip. I've been checked for a Hernia and they said it wasnt that. I was thinking my bladder but my understanding was that the bladder is central wheras this pain is left hand side and its always been there from last october.


Fri Apr 21, 2017 5:36 am
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Joined: Thu Nov 17, 2016 3:20 pm
Posts: 185
Post Re: Advice plz or suggestions
Im experiencing same discomfort now. Could be epididymis that runs up from testicle to lower left pelvic area. When i had epididymitis after vasectomy that the pain i got. Also had it when diagnosed with prostatitis. Remember that whatever you have in prostate could spread to epididymis..testes..or wherever.
When im on antibiotics i never feel it. As soon as im off it comes back.


Fri Apr 21, 2017 4:49 pm
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Joined: Wed Feb 10, 2016 6:43 pm
Posts: 40
Post Re: Advice plz or suggestions
Which hospital are you waiting for? You can call the number that is on the refarral letter and find out from them which hospital have shorter waiting times? Especially if you are in London where there are so many hospitals.


Fri Apr 21, 2017 6:57 pm
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Hi Pritesh, Im in glasgow and I've already phone 4 times and all they will say is that im on the waiting list. In 2 weeks times that will be 5 months on the waiting list. Just now iv having a good spell, much less pain, I've stopped drinking tea, have it now and then. Also drinking cranberry juice. No idea if these things have made a difference or the anti bios that I finished have helped. Still feel something lower left under belly buttom and near groing, not sure if its my bladder. Just need to wait on urology. The only thing thats really annoying just now its up 4-5 times a night to the toilet and can hardly pee and thats with tamusolin. If I was up maybe once or twice that would be amazing.


Thu Apr 27, 2017 6:22 am
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Another slight change is that I seem to be wiping something away from my anus, I would say orange/light brown, anus is a bit itchy and obviously irritated. Still got hip pain. No idea what the heck is going on.


Thu Apr 27, 2017 2:33 pm
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Joined: Mon Jan 14, 2013 12:12 am
Posts: 297
Post Re: Advice plz or suggestions
Tolmie - I bet this has something to do with your gut. I have been dealing with this 8 years. Especially with the organish stuff you describe. -- I bet it is diverticuli or diverticulosis. That is what the primary cause is and prostate pain and prostatitis is secondary. This is what I finally figured out my problem to be. Read my post on diverticulitis and prostatitis.


Sat Apr 29, 2017 5:53 pm
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Even more frustrated.

I managed to get a cancellation app with a urologist today, been on waiting list 5 month. He was 30 mins late for work because of traffic with quite a few of us waiting so not a great start.

First thing that happens is that nurse makes me pee into a tin and then I go to get bladder scanned. Nurse says bladder is tender but can be a few things, also no infection which I knew, back to waiting room to wait on doc.

Doc calls me in, asks me a few questions that all focus on overactive bladder and looks at penis, after about 3 mins says I'm giving you pills for bladder, see you later, book another app to see me.

Yes I have bladder problem as my flow is poor and always at toilet, a min of 3 times during night. So I agree with that but I have many more issues he didn't discuss with me such as pelvic pain, groin pain, blood in urine, pain down to ball sac that's improved but still cannot lie on front or side, discharge from anus.

So yes I agree something not right with bladder but does overactive bladder cause pelvic pain, groin pain, pain into ball sac, unable to lie on front or side, your views.

My doctor had told me before I went he suspected a prostate issue and needs camera done, I got very little done, not happy.


Thu May 04, 2017 7:27 pm
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Joined: Wed Feb 10, 2016 6:43 pm
Posts: 40
Post Re: Advice plz or suggestions
Hi Tolmie

Sorry to hear about this.

Did the Urologist insert his finger through your bottom to examine the prostate? I'm shocked if he did not. This is how they usually diagnose prostatitis because on examination it will be tender.

When is your next appointment?

Speak to your doctor about getting a referral to a Colol Rectal surgeon or a gastrologist.

I have rectal symptoms - anal fissure , tight anal sphincter and I'm 90% certain this is the cause of my Prostatitis. If it's not then it's certainly making the symptions worse. My anal sphincter is tight and I don't pass stools smoothly. I can feel this pressure being inserted on my prostate /bladder after every bowel movement.

I had a Botox done last August but the effects of it only lasted for 2 weeks. It is hoped the injection lasts for at least 3 months. I'm currently going through biofeedback training to train my muscles to function correctly but I can tell this is not going to work. I really want them to try another Botox and if that fails then do a surgery.


Sat May 06, 2017 10:31 am
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Joined: Wed Feb 10, 2016 6:43 pm
Posts: 40
Post Re: Advice plz or suggestions
http://prostatitis.org/redirect.php?lin ... times.aspx

Seems the maximum waiting time should be 18 weeks on the NHS.

I would complain

http://prostatitis.org/redirect.php?lin ... aints.aspx


Sat May 06, 2017 10:35 am
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Hi there, an update for you guys and your comments and ideas welcome.

Went to see urologist in may, after waiting since last october I was in 5 mins, he asked only about going to the toilet alot, checked me penis and decided I had an over active bladder, gave me medication which has left the bladder a bit. Was then scheduled another app which was a waste of time as it was with a nurse who couldnt do much and now booked in for cystoscopy.

So my symptons since the last last time and the start of all this are slightly different, less pain in my testicle area, still have this if I try and lie on my front. Have pelvic pain on my left side which starts at my hip and round to my back. Have really bad sciatica because I cannot lie on my front and need to lie on my back all the time. I would say that beer and tea make it worse so at least thats something ive noticed. This has been si frustrating, I'm still up during the night but the medication to relax the bladder has eased this a bit but as i say still cannot lie on my front and half pelvic pain. Im wondering if I have cystitis, the only other thing i can add is that i have a very small bit of urine after peeing which usually ends up in my underwear.


Sat Jul 08, 2017 5:00 pm
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Joined: Fri Apr 14, 2017 3:44 pm
Posts: 14
Location: Scotland
Post Re: Advice plz or suggestions
Update

Went for my cystoscopy, have to say it was very painful, dont ever want to go throught that again. They said I have a healthy bladder and that was it, so waiting for letter to go back to see them.

So still get pelvic pain, need to go to toilet and then dont pee much, worse during the night. Dribble after peeing which urologist said its perfectly normal but for me thats something i didnt used to do. Burning pain below belly button just above penis. They done a urine sample which once again had blood and protein in it. So still no further forward.


Mon Aug 14, 2017 12:02 pm
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Joined: Tue May 30, 2017 4:51 pm
Posts: 16
Post Re: Advice plz or suggestions
Metanoia wrote:
Urine cultures are notorious for false negatives, particularly if they are done after the first round of anti-B's. The anti-B's knock out the infection everywhere but inside the prostate, which is encapsulated and difficult to diagnose and treat.

A mans plumbing has "valves" that keep urine out of the prostate gland, and can also help infections hide in the prostate. Semen/ejaculate is largely made up of prostatic fluid, so if you've got infection in there an ejaculation should pump infected fluid out of the prostate where it can be cultured. A semen culture, done at least a month after taking any anti-B's is your best bet to find a bug that may be hiding/festering in your prostate.

Semen is just as cheap & easy to culture as urine, so there's no reason why your GP would not want to order this lab. I had negative urine cultures too, but a semen culture turned up haemophilus bacteria.

Sometimes urine "cultures" simply involve a dip-stick test for nitrates in urine. This is not a true culture & sensitivity, but it is dirt cheap, which is why a lot of doc's test urine for nitrates, rather than doing a proper culture & sensitivity on semen.

Hope this helps.


Hi,

I got a few questions for you if you don't mind?

I'm in the UK can I ask my GP for a semen culture? is he likely to decline?
Was haemophilus bacteria the entire cause of your prostatitis and are you cured now?

Thanks,


Tue Aug 15, 2017 5:16 pm
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Joined: Tue May 30, 2017 4:51 pm
Posts: 16
Post Re: Advice plz or suggestions
tolmie wrote:
Update

Went for my cystoscopy, have to say it was very painful, dont ever want to go throught that again. They said I have a healthy bladder and that was it, so waiting for letter to go back to see them.

So still get pelvic pain, need to go to toilet and then dont pee much, worse during the night. Dribble after peeing which urologist said its perfectly normal but for me thats something i didnt used to do. Burning pain below belly button just above penis. They done a urine sample which once again had blood and protein in it. So still no further forward.


I have the same symptoms as you. It's horrible because my symptoms seem to change all the time which is because the prostate and the muscles around it can affect so many parts. I think a semen culture is required, I'm going to ask my GP if I can get this done. Good luck and keep trying, we'll get to the bottom of this.


Tue Aug 15, 2017 5:20 pm
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