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

Men's health
1

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.

2

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 !!!

3

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....

4

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!!.

5

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.

 

6

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.

7

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.

8

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.    

9

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.

 

10

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.

 

11

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.

12

The gluten angle is interesting. I think it started here

http://www.chronicprostatitis.com/gluten-and-chronic-prostatitis-cpps/

13

Surgery? If you operate for pain, you get pain (old saying amongst surgeons_.

14

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.

15

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.

16

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.

17

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.

18

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.

19

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.

20

How does a Chiropractor treat prostatitis?