NHS Uro recommendations

Hi Kenneth,

Sorry I didn't provide more detail. I have shared my story so many times on here and didn't want to bore anyone. To sum up my issues: leaking urine/discharge?, painful penis opening, burning after urinating and uncomfortable for days after ejeculation.

This has been going on for 3 years. All tests urine, semen, stool and bloods clear. All STI/Gum tests clear. Ultrasound, CT Scan and Mri clear. I have paid for numerous tests privately. My urine came back with the bacteria Enterococcus faecalis. I was told 7 days of Nitrofurantoin would clear it - I took 28 days. Recent urine test has now come back clear (just crystals in urine) but all of my symptoms remain.

I have had endless antibiotic courses and 2 cystcopys. I have never received any diagnosis at all. Ciprofloxacin, Amoxacyline and Doxy have been the main courses I have been on for long periods of time but I am still in the same position.

I will also say that my partner has been also having symptoms for last 3years similar to mine but these have recently stopped. She also had Enterococcus faecalis in her urine funny enough. But I think this was why prostatitis was ruled out as we were both experiencing symptoms and I was told it is not spread sexually.

Thanks

Another symptom is the painful testicles. I can't wear any tight/hugging underwear as the pain gets too much.

Thanks for the information Derek,

I will definitely be in contact with Gordon Muir.

I didn't know that about Kent health care. Very interesting.

I forgot to add in my symptoms list the weak urine flow. Feels like there is a blockage. But obviously there isn't from the scans and tests.

Again, thank you for the info Derek

All the best

Hi Daniel ,

Have you had a urodynamics study ? 

Regards 

Hi bud,

I just did a quick search of what that is and it mentions a catheter being inserted? I have never had this. I have had numerous flow tests completed at the hospital (urine goes into the toilet and then into a jug on a scale). My last flow test - the urologist said he was quite surprised that I am a young man and was expecting to see someone in their late 60s walk in.

I have never heard of this test before that you mention. I will definetely mention it when I find my new url

Thanks

The reason I asked is because u mentioned a weak flow like you had a blockage but also said it can’t be a blockage as it didn’t show on scans . 

I also have a weak flow ( I’m 52) and I was diagnosed with “severe bladder blockage “ from a urodynamic study . I also suffer from prostatitis as a result of the blockage (which can cause urine to back into prostate apparently) which causes some of the other symptoms you describe .  Prostatitis rarely shows up on the normal tests . Mine was diagnosed from a prostate biopsy . 

I wish you well ! If you can possibly afford to I’d go private and have a lengthy discussion with a URO who isn’t under the NHS time constraints .

All the best 

Darren 

Re Kent hospitals. They shuffled my wife's  diabetic brother between hospitals as an in patient for several  months. One helped him the other would put him back to square one until he died about seven months later. His daughters who are nurses did not agree with the cause of death and lodged a complaint. Eventually after a coroners inquiry the cause of death was changed and a new death certificate issued  and criticism levelled at the hospital. 

Many hospital are now improving urology investigations and have a urology suite where all tests are done in one day.

Re: Kent hospitals - im sorry to hear about your wife's brother. That sounds awful. That is exactly how I feel in this situation regarding the hospitals here..constantly going back to square one. I wait 4 months for an appt only to be asked to do yet another urine test, a 5 minute chat and then I'm out of the door with another prescription of antibiotics (14 days worth). Now that I have challenged them and said something needs to be done, they are saying they are closing my case and batting me back to the GP where I started. I kicked up a fuss and the GP said pick anywhere and he will refer me.

Funny you mention epididymitis. When I first started getting these pains (3 years ago) the pain was solely in my right testicle. I was in so much pain I called an ambulance and was taken to A&E. They thought it was a vericule vein? They then said it was epididymitis. After some meds the pain went away and all of these penis problems/symptoms started. It has only been the last 6 month's the testicular pain has returned.

I have requested all of my medical documents for the last 3 years so I have a record in case I want to file a complaint against Medway hospital. I will have a list of all the meds I have been on. I have had at least 4 or 5 courses of cipro plus many others. If I get this list soon I will try and link it to this post so others can see what I have been prescribed.

Hi Pete,

Yes, it was was one of the first meds I took. It helped with the flow but all of my other symptoms remained. It's just been one thing after the other really

Hi Miriam,

Sorry for the late reply, I have been flat put working.

I discussed this possibility with my GP (stress linked to symptoms) and he waved it off. He said he believes my symptoms of discharge and pain in one testicle would not be caused by stress but instead something like bacteria or infection (which I have been cleared of).

I did request all of my gp/hospital paperwork for the last 3 years. I was trying to upload a photo of the list of meds I have been on but I guess I can't do that on here.

I did get referred to Gordon Muir in London - but 124 day wait with no meds is already causing me issues.

I need to find an NHS consultant that offers prostate massage or testing of the prostate fluid. I can't seem to find anywhere. From my GP paperwork I have been requesting this since April 2017 but still nadda.

Speak soon

You are supposed to be seen and treated within 18 weeks as an NHS patient. You are 18 weeks just for your initial appointment.

You could do your own prostate massage by buying a rod to do it with. There are many Youtube videos of the subject.   

Also look for the Billy Connolly excerpt from the Parkinson show of his prostate massage by a Uro :-)

 

If you have a look for 'six exercises to relieve male Pelvic Pain' from the pelvic pain Clinic, this is what I mentioned in my earlier comment.  I can't give the link but that phrase will do it. The guy who runs the clinic is private but he may not be too dear compared to having to wait for 124 days to a man who may not have a clue like your GP. At least take a look at the website and try the exercises for a few weeks.

Your GP will, of course, wave off such a stupid suggestion that stress may cause your pain as they are trained not to dabble in or to entertain thoughts about "alternative" stuff.  If you hunt about a bit there are studies that show 'antibiotics are no better than placebo for CPPS'.

There have been several posts on here from guys describing how they do their pelvic floor exercises so hunt about in these prostate discussions. Derek has also replied with some good ideas.

Hi Derek,

I did think the wait to be seen was quite extensive. The appointment will only be to see a Registra and then be forwarded on from there which will then mean a further wait to see a consultant. I am happy that I have finally got the referral made to a lead consultant - just frustrated that I only have a week supply of meds left. I am currently taking Trimethoprim.

I will look into the self prostate massage. But I need the fluid tested so seemed the best/safest route would be with a doctor/specialist who could extract the fluid and be sent off for testing. I wouldn't know how to catch the fluid or where to send it!

Thanks for the help

Excellent Miriam

Thank you. I will do some researching into the exercises.

Thanks again

There is a "Pelvic Pain and Disorders " Forum if to search it out.

Is this at Kings College hospital ? You are supposed to be seen and start treatment within 18 weeks and not for initial appointment. Have you said that you will accept a last minute cancellation as they do have them.Even phone weekly to ask. 

Yes that's correct Derek, Kings College Hospital at the LUTS clinic. I have called and asked to be put on the cancellation list but apparently as O was referred through the choose and book system I will have to keep an eye on cancellations my end as they cannot do this. I just pop on there every couple of days and have a look.

The clinic sounds great though. If sent through to Mr Muir, you spend a 2-4 hour appt with him as he prefers to treat patients as a one stop scenario. Tests etc all carried out in the one visit rather than sending you away.

I just need to be seen soon

Our local hospital is setting up for the full tests at the initial visit after that though it depends on the length of the wait for any surgery. As it is in a different area health authority do they have to agree the funding of the operation after the consultation or does choose and book take care of that.

I lived in Edinburgh and had problems getting them to agree to fund it in Newcastle but that was 14 years ago.