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Non Resolving Prostatitis/Urination Problems Help Please!

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james50350
james50350

Hi, I'm a 37 year old male looking for some advice from fellow/previous sufferers please.  On the 14th November 2014 I woke up and the morning pee was almost impossible..for the rest of the day stream flow down 60%, no prior warning, never any health issues prior..never even given

the prostate any thought.  Next day the same so went to emergency room and given AB's (Bactrim) for UTI...Also had red pee tip with burning on voiding. 

 

The four weeks following my urine stream went down to about 10% (then up a bit) and I didn't leave the house for 4 weeks as I could only void squatting down into a jug and pushing with everything I had, with the phone ready to dial 111 for emergency drainage.

 

Several visits to doc (8 different docs in total)...had DRE twice (first one painful, 2nd not) and reported as 'normal', all said might be a prostate infection or UTI and tried 3 different AB's.  After 6 weeks a doc said I had prostatitis and to get tested for STD, so I did and was positive for Chlamydia.  Given doxy for 1 week by GUM clinic...no improvement.  Back to doc and given Doxy and Flomax for 4 weeks.  No change.

 

Went back to doc after 4 weeks...referred for Ultrasound and flow test...Ultrasound all clear, prostate normal size, bladder emptying, kidneys normal, flow rate up and down like a yo-yo.

 

Continued to self medicate with Doxy

 

Back to doc again (Feb)...referred to URO for suspected stricture and earliest appointment is 29th May 2015 (70 day wait, nice one NHS!)

 

4 weeks ago URO wrote to doc and copied me in on the letter and suggested flow test is indicative of prostate problems and suggested 4 weeks of CIPRO and a different alpha blocker

 

Now 3 weeks into CIPRO and Xatral alpha blocker - ZERO improvement (if anything it's gotten a little worse)

 

Have been self dilating with Hagar Sounds 5 inches in (can't get past the J curve with those sounds), no stricture found as can easily pass a 7mm/8mm - ZERO improvement apart from a slightly bigger pee hole :-)

 

Will be seeing URO 29th May and the situation boils down to this:

 

In 5 months no improvement, prostatitis pain mildly on and off for the first couple of weeks then vanished, penis tip ALWAYS red but now no burning, pathetic flow rate, getting started is a nightmare, after waking especially bad (just drips before flowing and sometimes completely blocked, have to walk around before can void), tingling sensation that comes and goes from pubic bone/bladder area.  Have had a few occasions where stream was reasonable if the bladder is pretty full but the pee muscle keeps shutting on and off no matter how hard I try to relax.

 

All this after a total of approx 12 weeks on AB's and 7 weeks on Alpha Blockers.

 

Does anyone have any ideas?

 

I am now concerned I have an aggressive prostate cancer/BPH and have ordered a home PSA test and a set of Van Burren sounds to attempt to dilate myself to the bladder neck

 

I've just done a strip test on my urine and shows 100% normal.

 

Doc said 'Don't worry it's not serious you're too young for cancer or BPH - whilst I appreciate his optimistic view the results speak for themselves - this is not going away and frankly it's screwing my life up big time)

 

Sexual function is normal yet a rather pathetic display on ejaculation if you know what I mean (unless it's been 2 weeks then there's a half decent display)

 

With the URO appointment still 6 weeks out I'm clutching at straws trying to solve this.

 

Any help, suggestions or advice would be appreciated.                            

 

Thanks

1 like, 39 replies

39 Replies

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  • james50350
    james50350

    Posted

    UPDATE 14th July 2015

    Just updating on my progress...

    Still having urination problems and from time to time a 'hot' feeling in the perinium area.

    Had a CYSTOSCOPY yesterday morning....nothing abnormal found...no obstructions, bladder in perfect health, urethra in perfect health, prostate looks normal.  Also the URO did another DRE (the 4th one!) and all normal.

    The URO has no solution to my problem and he suggested:

    1) Do nothing

    2) Meet him in the clinic in a few months to 'catch up and see how things are going'

    3) Book a URO Dynamics test to check the bladder pressure (which will be in a few months time as it NHS) and if symptoms improve to a point where I'm happy then cancel the test

    Not a lot of help really

    His only suggestion is that I contracted an Acute Prostate infection....it was cured by antibiotics and could take 1 to 2 years for everything to calm down and return to normal.

    I have also had a PSA test done today also just for the sake of it.  I previously did a home PSA test which was negative.

    End result....I'm stumped

    No physical evidence of anything wrong at all, yet still can't pee properly

    Ideas anyone?

  • james50350
    james50350

    Posted

    I also wanted to give a brief description of the Cystoscopy proceedure for anyone thats concerned about having it done:

    1) Insist on having one done...they are awesome and will eliminate all your worries of something more sinister causing your symptoms

    2) It's a quick proceedure (about 3 mins) and painless apart from 3 seconds when they push through the prostate into the bladder....those 3 seconds caught me by surprise... about 7 out of 10 on a pain scale (10 being the worst)...it was enough to look at the URO and say 'wow that hurts'...next thing I knew and I could see the inside of my bladder on the screen and all pain was gone.

    3) You can watch the screen and see everything for yourself

    4) If its all clear you'll immediately feel happier and relieved as I was

    5) First pee immediately after took maximum strain to get anything out

    6) First few pees after sting like hell!

    7) Within 6 hours I was fully recovered and no stinging when peeing

    8) I had sex 3 times that night and no issues whatsoever smile

    Zero improvement to urine stream despite the 'stretch' from the Cystoscope

    The Cystoscope is not particularly 'thin' as they say, it must be around at least the equivalent of a 9/10 mm sound but like I said....painless apart from the 2 or 3 second journey through the prostate into the bladder.

    That's it!

    Get one done if you can!  Nothing better than seeing with your own eyes that theres nothing 'serious' going on in there.

     

    • nealpros
      nealpros james50350

      Posted

      I have had 2 of them. They both hurt like hell for most of the procedure. That said, maybe the doctors were incompetent. The anesthetic should be very cold, and the doctor should proceed slowly and allow the anesthesia time to work. Neither doc did that.

      Neal

    • bruce19007
      bruce19007 nealpros

      Posted

      I had two of them in two years. The trick is give the anesthesia time to work.  10 minutes at least.  I felt nothing.
    • nealpros
      nealpros bruce19007

      Posted

      I just want to clarify what we are talking about. I was talking about anesthesia gel that the doctors put up into my urethra, at the end of my penis. Is that what you are writing about?

      My doctors didn't wait any time at all after they did that, and as I wrote, it hurt.

      Neal

    • bruce19007
      bruce19007 nealpros

      Posted

      Yes, exactly.  It was this forum that alerted me to the idea to have them wait a little while for the gel to take effect.
  • Lion62878
    Lion62878 james50350

    Posted

    Please, members of this group, I realise you are discussing about cystoscopy, and mine is a question on how frequent should one go for a cystoscopy?
    • nealpros
      nealpros Lion62878

      Posted

      It's not like a dental check up that one should do every 6 months regardless of how one feels. It is a specific diagnostic tool which should be used when needed.

      Neal

    • Lion62878
      Lion62878 nealpros

      Posted

      Thanks a lot for the advice. I postponed indefinetely the cystoscopy appointment because after TURP I was suspicious of any invasive procedures which did not guarantee cure. I continued taking multivitamins with minerals plus cellfood supplements (especially repair). Currently I take the above mentioned products (supplements) irregularly and the pain has subsided unlike when I started and I had to stick to the suggested dosages. The bladder emptying has improved a lot - unfortunately I do not have any quantitative records but biologically I feel better and emptied when I pee. I wake up only once at night to empty the bladder and these days it is towards dawn (4-5 am) whereas when I started taking the supplements 3 months ago I would wake up in the middle of the night after going to bed around 10pm. My only problem at the present moment is a discomfort between the anal region and the testes and sometimes comes to the right thigh (behind the thigh) and I feel like I am sitting on something uncomfortable. Sometimes I feel like there is something in my rectum that is trying to come out forcefully. Sometimes it is painful but it is no longer very painful like before I started taking the supplements. Unlike in my last three years 2012- 2015 when I felt the pain in the groin area 24/7, sometimes the discomfort is not there (may be 30% of the time) and I feel okay. My thinking is this could be a reversal of the symptoms because I have been in pain for a full three years before getting some relief so I think it would take sometime for the symptoms to disappear completely if ever they will. At times I also feel like my scrotum/testicles (mostly the right one) are sticking on to the thigh and groin area in an extremely discomforting and sometimes painful way. Therefore three days ago I started applying  baby powder (ordinary baby powder) to the groin area and the base of the testicles to reduce/eliminate the sticking on sensation. This seems to help a lot in reduce the sensation of the scrotum sticking on to the other areas of the thigh and pain is also reduced but it has not gone away completely and I am still monitoring. However there is a great improvement from my observation. I am thankful that someone advised me to delay the cystoscopy because it was suppose to be combined with bladder neck incision if needed. And I can tell you the bladder neck incision was most likely going to be done to bring in more money for the Urologist and yet right now i feel I do not need it because the urine flow has improved and bladder is emptying (may be not completely but it is much better than before). I regret thatm I learnt of PAE too late. Has anyone had  experience similar to mine after TURP?
  • kenneth1955
    kenneth1955 james50350

    Posted

    It hard to say what is the problem. but what ever you do don't let them talk you into anything that will cut away at the prostate.  If you do your sex life will be changed.  Going to read up on more to see if I can find out anything   Good Luck  Ken
  • bob955
    bob955 james50350

    Posted

    Hi James. Have the frequent urination issue, and sometimes pain in testicles or down leg, but that is less frequent.

    Be sure you find a urologist who can tell you in fact that your prostate is enlarged and causing your problem. Because if it is caused by something else, you'll be treating for something else, and then something else again if that doesn't work - and nothing will work if you are being treated due to a prostate issue and it's not.

    In my case, it is due to me not emptying my bladder completely. According to my new urologist, I do not have prostatitis as the former urologist stated - he believes it is pelvic muscle tension stopping the flow and suggested I read Headache in your Pelvis - available on Amazon. 

    I was told I have a normal or small prostate yet my earlier doctor was treating me with drugs which would not work in my situation.

    Keep me posted as to what your urologist says and maybe I'll have more feedback to share.

    I would NOT go on any drug regimen until you see a 3 urologists - it can cause permanent effects - and for me - I couldn't sleep. But besides that, the drugs are not for those with pelvic muscle tension - maybe for enlarged prostates it might work better. So a correct diagnosis is most important.

    • james50350
      james50350 bob955

      Posted

      Hi bob, thanks for your info, I am pretty sure that my prostate is normal as I've had 4 DRE's now from 3 different doctors, an ultra sound and cystoscopy, it all showed the prostate as normal.

      I have heard about the book 'Headache in your pelvis' and will read that

      I have a URO dynamics bladdder investigation in October so will keep this discussion updated on what is found (if anything)

      I'm wondering now if perhaps the bladder neck is not relaxing enough when peeing as flow is so variable...sometimes decent flow, other times not and other times very slow start and rising to a decent flow.  Although nothing like my flow rate a few months back which was up and down like a yo yo during each pee.

       

  • bob955
    bob955 james50350

    Posted

    You are welcome James. 

    15 years back, my urologist thinking I might have a bladder neck obstruction due to a bladder diverticulum and so I had a tuip first, that didn't help, and then the next year had the bladder diverticulectomy. 

    A few years back had a problem with emptying again,  but not a major one but my doctor told me to think of something relaxing, and that indeed did empty me - or at least I felt I had emptied.

    To make a long story shorter :-),  last Nov I felt my stream abruptly stop midstream that had never occurred before - and now I had to make a lot more effort and spend a lot more time emptying.

    My  old urologist injured me while doing a finger rectal exam and he stated I had prostatis and gave me antibiotics which I didn't want to take.

    A new urologist  believed I had pelvic floor syndrome which is misdiagnosed as prostatis. In fact the book stated more than 90% of cases are misdisagnosed as prostatitis.

    This is where your pelvic muscles are becoming tense, cause you to stop voiding. It can also cause perineum pain, and pain during sex or urination.

    Physical therapy and exercises are the cure to alleviating or stopping symptoms. 

    So yes, I think I would check to make sure I don't have a bladder neck obstruction first - and no bladder diverticulum which is caused by years of your bladder trying too hard to empty.

    I realized now with the pelvic floor syndrome diagnosis, that when my doctor performed the bladder diverticulectomy, what he didn't do is diagnose the cause of that BD - so that it might re-occur years later if the cause was not corrected.

    So be aware of all these things I learned, the hard way!

    Best of luck to you James. I hope this information has helped.

    Bob

     

    • james50350
      james50350 bob955

      Posted

      Hi Bob thanks for your info, it's very useful and I agree about the pelvic tension theory...thats exactly what it's like for me...I can feel the sphicter shutting off without my conscious command and sometimes taking some time to relax. 

      I've had the urodynamics test done and no obstruction was confirmed and bladder pressures all working perfectly.  Peak flow rate of 18 ml/sec.  Residual bladder volume less than 20ml.  Ultrasound scan all normal.

      It's the end of the line for the NHS (western medicine altogether I guess), all tests show perfect health and anatomy.

      The best they offered was Cialis as it's been shown to help the symptoms.  I've not taken them so cannot comment.

      One interesting point is that passing the catheter through the prostate hurt like hell!!! Jeezz, just like the cystoscopy so I'm wondering if this is normal?  Should it hurt so much to insert a thin catheter? (wondering if my prostate is still sensitive as a DRE does not hurt in the slightest)

      The end diagnosis from the NHS is...there's nothing wrong...all we can do is consider surgery to see if that helps.  I would not consider surgery.

      I think it's either pelvic tension or a prostate that's recovering from an acute infection (the uro did say it can take 1 - 2 years for a prostate to recover fully from infection)

      I hope my story helps someone in the future and any suggestions to speed recovery are appreciated and I'll check back often

      In health,

      James

       

    • bob955
      bob955 james50350

      Posted

      Hi James,

      The last time I had a cysto was in 1998 or so, so I can't remember the pain, so I can't comment on your question.

      I was surprised that your residual is so low at 20ml. My residual is between 170 and 220 ml, and I was told that was ok (not normal, but OK and not needing surgery).

      Being your residual is so low, what is your issue?

      If you're interested in learning more about pelvic muscle floor syndrome, you can find "Headache in your Pelvis" on amazon.

      Best to you.

      Bob

    • james50350
      james50350 bob955

      Posted

      Hi Bob

      Yes a low residual, the issue is getting the urine out...slower stream and sometimes takes 10-20 seconds to even get going and starting as a dribble.

      All the tests show OK

      Yet my peeing says theres a problem.

      I will get that book!

      Thanks

      James

       

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