CPPS / BPH / Chronic Non Bacterial Prostatitis - My Sad Story
Posted , 27 users are following.
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.
0 likes, 57 replies
RonTexan CraigB47
Posted
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 !!!
mal23592 RonTexan
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david91143 CraigB47
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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....
howard50192 CraigB47
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is by calling it EVIL!!.
derek76 howard50192
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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.
mal23592 howard50192
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CraigB47
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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.
RonTexan CraigB47
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howard50192 CraigB47
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take a look at the thread "depression and Prostatitis"
kind regards
Howard.
lunarrainbow CraigB47
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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.
mal23592 lunarrainbow
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lunarrainbow mal23592
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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.
CraigB47
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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.
derek76 CraigB47
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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.
mal23592 derek76
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derek76 mal23592
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richard60680 CraigB47
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CraigB47 derek76
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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.
CraigB47 derek76
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derek76 richard60680
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derek76 CraigB47
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I have also had ongoing correspondence on prostate problems with a leading US urologist.
derek76 CraigB47
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If we argue more the Moderator will step in and delete us.
mal23592 derek76
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derek76 mal23592
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CraigB47 derek76
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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.
derek76 CraigB47
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CraigB47 derek76
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derek76 CraigB47
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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.
david91143 CraigB47
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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.
derek76 david91143
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I told him that I was thinking of going to Zambia at Christmas, he shook his head sadly
richard28138 CraigB47
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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
fj20848 CraigB47
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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
rahul67955 richard60680
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Hi Richard,
How is ur condition now. Did u conquered this devilish prostatis? I'm crying for Help.. pls advise