CPPS / BPH / Chronic Non Bacterial Prostatitis - My Sad Story

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I'm 48 now and have been suffering with this condition for 19 years. I was first diagnosed in 2008, after 2 years of invasive procedures (Fixed cystoscopy), negative urine and semen cultures, x-rays, and course after course of antibiotics, all carried out by a rather ageing Urologist who eventually after 2 years gave up and told me it was all in my mind.

My symptoms are

Pain in the perineum

Paid in the pubic area (not at the same time however !)

Pain in my right testicle

Urgency urinating

Poor flow

Dribbling

Hesitancy

Nocturia (3 - 4 times a night).

Sporadic ED and ejaculation problems (low sperm amount, dribbling etc).

Pain in the length of my penis.

Sometime an itching sensation inside my prostate area.

Falre ups often happen during or immeduately before seconadary infections such as colds, flu etc.

Numbness expecially after sitting down.

I saw my 2nd Urologist in 1998 who diagnosed Chronic Non Bacterial Prostatitis and put me on a course of Alpha Blockers. Eventually over time the symptoms eased and I learned to live with them. A number of painful but short lived flare up occurred over the next 10 years or so. I used Saw Palmetto for a few years but then gave up. Ibuprofen and other painkillers had little effect. Naproxen (as prescribed by my GP) was useless. As an aside, I became a father 8 years ago - so some things still work every now an then..

Two years a go i had a major flare up which i attribute to stress. In the last 6 months I have had 2 major flare ups lasting weeks. I approached my GP in the vain hope that Urology had advanced over the years. I was referred to another Urologist who again tested my urine and PSA score, both of which were normal. He gave me a DRE and massaged my prostate to try to expell secretions - I have never experienced pain like it. I felt something burning travelling through my penis but the pain became too much before it expelled into a test tube. I then passed uring and that sample showed a slight e-coli infection, although he said it was most likely contamination. He placed me on antibiotics which did nothing.

I had a flexible cyscospoy which showed no abnormalities. Same with an MRI scan - in fact, he said my prostate looked normal !

He advised my GP that pain management was the way forward and prescribed Amytriptaline (which made me drowsy) and Gabapentine (which i have yet to take). My GP agreed to trying me on Tamsulosin which had little effect except giving me retrograde ejaculations. He has now agreed to try me on a small daily of Cialis as some studies have shown positive results.

So, here I am. Almost 20 years down the line and no closer to a solution. My quality of life is poor, I am in constant discomfort at the moment and just hope to hell that the Cialis turns out to be a wonder cure.

I will keep everyone updated on my progress.

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  • Posted

    Craig, there are a number of reports in these prostate forums about food allergies, especially gluten intolerance causing prostate and general urinary pain. The examples, at least three individuals I can remember, all stated that they found the solutions themselves with no help whatsoever from multiple urologists.  I don't know how to direct you to those posts in these forums but if you can find them you will see a remarkable similarity to your prostatitis origin. 

    One person stated that he went on an immediate gluten-free diet and saw a complete reversal of pain within days. It's worth a try. Gluten is the most likely but not the only food substance which may cause an allergic reaction.  I expect that a visit with a dietician might be fruitful.

    Keep in mind that I am advising you of this possible solution because I read accounts of similiar problems here in these forums. If this helps you then pay back by relating your experiences here. Thousands of sufferers read these posts. You could help lots of them. Good luck !!!

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  • Posted

    Hi Craig, thanks for posting this - although it's not very comforting!

    I was on amytriptaline and gabapentin for pain in my leg prior to having spinal surgery. The amytriptaline helps you to sleep so I was taking that at night. I stopped taking it a few days after my op as I didn';t need it any more. I started taking it again when my 'irritable bladder; thing started and it helped through the night but I still had to get up for a pee several times. Once my catheter was installed the pain in my pubic area has stopped and, of course, I don't get up in the night at all.

    I was on gabapentin also - and it;s stronger brother Pregabalin. These are mind altering drugs to address pain in the brain. Didn;t work for me and in fact at higher strengths just made me feel sick! I stopped taking them the day after my op because the source of my pain had been addressed - my spine!

    Good luck though, sounds miserable....

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  • Posted

    I sympathise with you and I think that many on this forum have suffered the same as you to a degree. Have you asked if there is treatment other than medication IE: Surgery? This is what I did and said that I had no quality of life ( which I have not ) only then was I offered a TURP (Still waiting )the only way I can describe chronic Prostatitis

      is by calling it EVIL!!.

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    • Posted

      A TURP taking away some prosate tissue would not help. I still had bouts of prostatitis in the years after my PVP when I initially had BPH and again since Thulium laser surgery.

      It is like a bad tooth that has to be removed to get rid of the pain. The only definate cure would be a total prostatectomy and I doubt if any urologist would consider an extreme like that.

       

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  • Posted

    Thanks for all your reploes, and sorry for the typo's in my original post - I cant seem to find a way of editing it.

    The theory about Gluten Intolerance is an intersting one. I will definately explaore it more.

    I started taking Cialis yesterday. It can take 1 - 2 weeks to work on the bladder and prostate muscles but so far I have felt a slight increase in my flow, although yesterday evening after two bottles of beer I was backwards and forwards to the bathroom all night.

    I really do empathise with the thousands of men who live with this condition. At times I feel like crying. I would rather control the condition, surgery isn't something i want to think of at the moment.

    I'll try to give an update in a few days.

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    • Posted

      If you have an allergy like gluten intolerance keep in mind that the problem could be from many sources as anything you eat or drink winds up in your urinary tract. If I were you I would try gluten elimination first for a month or two, if no improvement then I would seek an allergist and dietician. I have a feeling that they know a lot about allergies affection the urinary tract. Good luck and let us know.    
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  • Posted

    I'm glad if the replies helped Craig, it's funny when you said you felt like crying

    take a look at the thread "depression and Prostatitis"

    kind regards

    Howard.

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  • Posted

    Hi Craig! 

    Dave here from North Carolina. I just happened to come onto this forum when I saw your cry for help.  Normally I don't inject myself into other forums--I hate it when other people do that on forums I frequent!--but I thought I might have an idea for you. 

    I'm a patient, and I'm not a health professional, so I won't try to diagnose you.  I'll just try to give you some possible leads.

    If you do a Google search for "healingwell gat-goren" you'll find the Healingwell forum where I post as "ChicagoDave".   We discuss prostate issues from the standpoint of two procedures that aren't widely known, Prostatic Arterial Embolization (PAE) and Gat-Goren (GG).  The procedures are entirely unrelated except for the coindence that both are performed by interventional radiologists, rather than by urologists, for example. 

    I don't know much about PAE.  I'm a GG patient.  Dr. Yigal Gat pioneered this procedure, proposing a new theory that hypothesizes that different prostate conditions can all stem from the same underlying condition: poor venous drainage and circulation in the prostate/bladder/testes region.  Board-certified urologists universally think this is a nutty theory and that his proposed treatment is totally quackish.  If you ask their opinion, this is what they'll tell you, as they have told me.   Dr. Gat thinks that his procedure treats SOME CASES of conditions as disparate as: BPH (benign prostatic hypertrophy), low testosterone, varicocele, chronic prostate conditions of various names that don't respond to antibiotics, male infertility and some very early cases of prostate cancer.  Whew!!

    You have *not* been diagnosed with BPH, but you do have the usual BPH symptoms of urinary frequency, etc.  (Prostate size can be measured with ultrasound by urologists or diagnostic radiologists.)  Some patients with varicocele report testicular pain, even though you have not been diagnosed with varicocele. (Urologists consider varicocele a mostly benign condition.  Dr. Gat considers it a marker of the underlying circulation problems that might cause other problems listed above. Type 1 and Type 2 cases of varicocele can be diagnosed by a diagnostic radiologist using doppler ultrasound.)

    I'm not a doctor, and I'm not diagnosing you.  I'm just pointing out that your set of symptoms remind me of symtpoms of other patients I've heard about.  Whether the etiology is the same, I don't know.

    I'm the world's biggest believer in being skeptical about stuff you see on the Internet. Talk with doctors.  I'd suggest you email Dr. Gat directly and see what he thinks.  You can find his clinic's web site by Googling "Yigal Gat".

    Okay, long post.  Sorry about that guys!  Let's wrap this up.

    Downsides to GG procedure:  It takes some time (months, years) to show results.  And it's really expensive, over $25,000 (US dollars), all-in including travel to Israel or Cyprus.  And your insurance won't cover it, to boot.

    Not everyone has good results from GG.  I was one of the luckier ones.  I had my procedure in 2011 for BPH and low testosterone.  My T did indeed go up.  My prostate shrunk from 51 grams to about half that in the following year according to ultrasound scans in my possession.  Two years post procedure I was able to discontinue all Rx drugs (Rapaflo), and in the year since then I haven't needed any.  My urinary symptoms of BPH have improved a lot over three years.  No drugs, no knives, no lasers, no drills. 

    I had BPH, not your type of chronic condition.  But 20 years ago, I had chronic prostate conditions which I now believe were caused by the circulation problem that would later cause my BPH.  So I can relate to you.

    My heart goes out to you.  Regardless of which direction you choose, I sincerely hope that you get your health back.

    And sorry if I intruded on your board, folks.  But I saw the cry for help and thought I needed to at least mention what I thought.

     

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    • Posted

      Only problem with this theory is that studies have found the prostate to be essentially normal in most cases of chronic prostatitis. I think it's a nerve/muscle issue, mostly.
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    • Posted

      Mal23592:  Yes, that could well be.  I think there are probably many different conditions that get thrown together under the same name, and it's possible that "chronic prostatitis" might cover some conditions that could benefit from this procedure.  Having been labeled with some of these terms ("prostatodynia", in 1992; "BPH" and "LUTS" in 2009) yet helped by GG in 2011, I'm no longer a big believer in these labels as unique indicators of etiology.  ("Bacterial prostatitis" and "prostate cancer" *are* labels for etiologies for which standard medical practice can often effectively address. My comments refer only to the squishy types of non-bacterial, non-malignant BPH diagnoses that old guys often get.)

      To be sure, back in 1992, my "prostatodynia" was helped by taking an alpha-blocker.  At that time, not all urologists knew about this therapy.  My first urologist never heard of it.  

      I'm not a doctor, just a patient.  YMMV.

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  • Posted

    I wanted to give you guys an update.

    I took Cialis 5mg daily for 2 weeks but other than it giving me stonking hard ons it little or no effect on the Prostatitis symptoms.

    A week last Tuesday I was crippled with pain. The burning in my pubic area was unbearable and the worst it has been for many a year. My entire perineum felt knotted and I could hardly urinate. I went back to see my GP who did the usual urine tests. Two days later they came back clear - no bacteria, no fungal infection, no white blood cells, no red blood cells.

    Last Friday I went back to see him (a week ago) and something he had said previously was playing on my mind. He mentioned another patient of his with crippling Prostatitis whose cause, it turned out, was lower back pain and the associated muscles knotting up. I mentioned that my perineum felt knotted and that whenever I had a drink of alcohol, the symptoms would ease substantially. In fact, this had been happenening for the whole time I was suffering going back to 1996 and I never corrolated the two. I also mentioned lower back pain, pain in my buttocks and legs that sporadically came and went. I also mentioned that of all the alcoholic drinks, I had recently had a G&T for the first time in years when out for a meal and the symptoms literally went within 10 minutes - no pain and I was peeing like a horse ! Apparently Juniper is a diruretic.

    We started discussing whether treating the symptoms and not the root cause was the problem. Basically I had been labelled with Prostatitis when in fact there was nothing wrong with my prostate per se, but that and my urinary tract and bladder were being affected by the tightening of muscles in my pelvis.

    My GP has prescribed Diazapam, 2x2mg 3 times daily. I am trying 2 tablets daily, one in the morning and one in the afternoon. I am also taking 10mg of Amytriptaline before bed. Diazapam, as you know, is a muscle relaxer.

    Within a couple of days I noticed less pain, less frequency, stronger urine flow and the muscles in my pelvic floor noticeably relaxed. I can now tense them without feeling pain. I know its early days, I have to find the right dosage and am due to see my GP again on Tuesday for a review.

    Having done some research on the net it would seem an increasing number of Urologists are looking at muscular problems in the pelvic floor area of patients particularly with grade IIIb Prostatitis (the non inflamatory type). In effect, the prostate isnt the problem, its the surrounding muscles going into spasm and putting pressure on the uretha, bladder and prostate. Whilst this obviously wont work for everyone, and it may be a false dawn for me, I am greatly encouraged and want to share. I would say my symptoms are 75% better than they were. I maybe worth discussing with your GP or Urologist if, like me, there is no obvious sign of infection or inflammation.

     

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    • Posted

      Cialis should not give you an erection unless you are being sexually aroused.

      Diazapam and  Amytriptaline  are dangerous drugs that I would be loath to take but I'll try a G&T before bed time rather than putting some rum in my hot milk.

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    • Posted

      Diazepam and amitriptyline are not "dangerous drugs", friend. They are some of the most commonly prescribed drugs in the world, and both can be useful for chronic prostatitis.
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    • Posted

      Read what they were designed to do and their side effects. They are both mind bending drugs. Diazepam (valium) is addictive and causes dependency and should only be prescribed for short periods of time.
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    • Posted

      Hi Craig, although only 3 years in, i have been struggling with the same symptons. Through frustrations with GP, local NHS Urology and even a private consultant costing £00's, google has also brought me to getting best results from exploring muscle relaxation. I am now following the route of Chiropractics, Acupuncture and a change of diet. Great results, with a bit of yoga/daily stretches and NO drugs anymore, things seem to be managable to date.
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    • Posted

      You have your opinion. I trust my medical professional's judgement not some random poster on a message board (with all respect).

      I wanted to share because this is a horrible disease that Urologists still focus on the symptoms when perhaps they should focus on the cause. Im sure my GP will discuss any concerns with me at my next visit.

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    • Posted

      Re Cialis. I said it gave me great hard ons. You assumed that was all the time. It wasn't. I suggest you don't read between the lines and make your own rubbish up.
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    • Posted

      I have seen urologists at four UK hospitals over the last twenty years for BPH and prostatitis. I had  PVP laser surgery  on my 75 grm prostate and later thulium laser surgery when it regrew to 125 grm. I still get prostatitis at times but none suggested your mind bending drugs.

      I have also had ongoing correspondence on prostate problems with a leading US urologist.  

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    • Posted

      Your wording gave that impression. This is not Twitter, you sound very agressive in your posts in a forum where we try to help each other and share our good and bad experiences for the benefit of others.

      If we argue more the Moderator will step in and delete us.

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    • Posted

      I am not trying to start an argument.  Your post gave a very strong impression that you were focusing on the negative aspect of the drugs rather than any benefit I might be feeling.

      After living with this awful condition for half my life I will take any relief I can get. If mind altering drugs as you call them are the answer then so be it.

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    • Posted

      Thank you. I hope everyone who has this condition can find some help. I am not trying to be confrontational I was simply trying to help others. My point is that maybe treating the symptoms isn't always the best policy. All drugs carry risk. I tried Tamsulosin and it was awful. Others find it works like a dream.
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    • Posted

      The nurse at the medical practice I go to says that Tamsulosin is the most complained about drug by her male patients.

      As with homeopathy and holistic medicine perhaps the best method is to treat the person and not the  disease.

      I have found homeopathy helpfull for some lesser things and my wife had some sucess with accupuncture. Some people though are said to be cured by placebos... who knows.

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    • Posted

      Hi Craig.  I had a severe retention/urge/hesitency problem in September and had a catheter put in at A&E as a result.  I had it in for 30 days and during that time those 'symptoms' disappeared, of course.  I was on Tamsolusin throughout.  I had the cath out about 6 weeks ago and havng read advice here, etc, I cut back on the Tamsolusin because of bad side-effects (headaches, stomach upset, errectile dysfunction) and felt better for it.   I went to see the Urologist 2 weeks ago and he gave me 2 options: prostate surgery or continue Tamsolusin.  I explaned about the side-effects and asked if there was an alternative (per your posting above) but he said there was not.  He was a very nice guy, and easy to talk to, but this really put me off him.  I told him that cutting back eased the side-effects and he said it was OK and up to me to try to find the best dose, etc.  !    I've stopped taking it altogether now and feel so much better.  I don;t have any of the previous symptoms - but I think, as do some other health professionals, that my incedent is related to a back trauma and spinal-surgery that I had in June.  i was very stressed at work in September so I think that was a factor too.  I've always had a 'shy' bladder, even as a child, so hate using public loos and have never been able to 'p*ss like a brewer's dray horse' so I can't see that my problem is to do with my prostate at all! (on inspection, it is not 'enlarged' )  Surgery is clearly NOT the answer for me!  But I do beleive in your finding about muscle contractions/spasm so want to explore that with my GP.  Meantime, how are you getting on with Cialis?  Have you tried other relaxants - does yoga, pelvic-floor exercise help?

      I'm really worried about a retention recurrence - especially when away from the UK or in places where hospital are miles away.  I;m therefore thinking about trying intermittent catheters too, just in case: this seems really popular for fellas in the USA (and foley catheters for long flights, etc) - but I think we will have to have a prescription to get hold of a pack!  I;ve been catheterised twice, so know what to expect.  If I ever (hope not!) get anothe lockdown, an intermitent (use once) cath drainage will give me another 6 hours either to get to a hospital or calm down!  

      Hope you are keeping well.

       

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    • Posted

      When I was first diagnosed with BPH the urologist was concerned about possible retention. He advised me to be careful where I went, Don't go to any islands he said.

      I told him that I was thinking of going to Zambia at Christmas, he shook his head sadly

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    • Posted

      Hi CraigB47, you may not get this reply since the post is a year old.  I too have the exact same symtoms.  Very frustrating.  The only piece to add for me is that my left foot is cold and tingly.  I'm currenlty on several pain medicines, Lyrica and a muscle relaxer.  Its manageable, but thats about it.  I'm still a rookie (7 months) with the condition, but trying to be optimistic.  

      My $.02  

      Don't sit to much

      relax and laugh and drink a little

      stretch and do some type of yoga

      Don't think about the problem

      Take deep breaths

      Stay in touch!  good luck

       

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    • Posted

      Hi Craig

      Have you been doing kegel exercise. Because misunderstanding he way it should be done may cause muscle spasm nd pain. I have noticed that happened with me. However, I would like to ask you how sex activity (intercours) affect your BPH symptoms? and how tough exercise activity affect your BPH symptoms?

      Wish you all the best

      FJ

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