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

Posted , 27 users are following.

CraigB47
CraigB47

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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  • eric_35721
    eric_35721 CraigB47

    Posted

    Im new to this forum, but have finally come across someone that I can actually relate to.. There is so much confusion and controversy when it comes to peostate desease. Im now 45 and have suffered from the same exact symptoms for about 16 years. My symptoms have always been a weak urine stream, small amounts, sudden urge, pain around the rectum and testicles and pain in buttock area. Through these years I have had several different tests including cystoscopy which came back normal, rectal exams where they said I had a "boggy" prostate and exrays showed a small granuloma which I was told it was no major concern and maintained a PSA of 1.0,. My job requires sitting for long period of time and can't do much to avoid pain. I use to get flare-ups that would come and go but lately the pain on my buttocks has taken a toll. I have also been on alpha blockers and had no success.. Im scheduled for a rectal ultrasound this coming week and have been under a lot of stress. Since my father was diagnosed with prostate cancer at the age of 69, I've always lived with that fear of being diagnosed with prostate cancer..

    Thank you for sharing your story and I look forward to hearing from you.

  • j29338
    j29338 CraigB47

    Posted

    Did you try gluten free and see if it helped?
  • caleb93cook
    caleb93cook CraigB47

    Posted

    Hey CraigB47 I know this thread is old but I had to comment my experience with everything so far for me. I am 22yrs old and have had chronic prostititus and epididymitus for 2yrs. I have had 3 spine surgeries, first at 13, second at 18 and third at 20. My third surgery was on my l4-l5 and S1 and immediately after surgery I developed the prostititus and epididymitus. I have been on every kind of antibiotic there is flagyl worked best for me. My symptoms never go completely away but do ease about 75% better for a few months at a time then all the sudden hell returns. Like I said I have had 3 spine surgeries and I would have spine surgery 5 more times if I knew it would get rid of this issue. This is the most painful thing I think a man can have, its depressing and really takes a toll on you. I use to be very sexually active and now my fiance can beg me at times for intercourse and I'm just not up to it. Its been months since we had sex. I have noticed recently that I tighten up my lower extremities without thinking about it. When I'm standing if I don't think to relax my buttox and muscles surrounding my perineum then I hurt worse. I am confident with all I have read and encountered with multiple urologist that it isn't urological at all. I have a appointment scheduled with one of the best neurosurgeons in the state of south Carolina at MUSC. I will keep everyone posted on my progress because there is nothing more I want than to be healed and I know I'm not the only one. I have nerve damage and hopefully this is the root cause of all my issues. If anyone has any questions please feel free to ask, I am happy to answer any questions even the personal ones.

  • mlb0407
    mlb0407 CraigB47

    Posted

    I am a patient, not a doctor.

    I'm going to ask you the question that too few medical care providers ask: what's your trauma? Was it physical? Mental? What happened to you in your childhood?

    Were you ridiculed for an erection at an inappropriate time? Did you have an incident where you wet your pants in front of people?

    CPPS and nonbacterial prostatitis are essentially an issue of inflammation. Your body is inflaming the muscles in your pelvis to protect you from something.

    Your body/mind is perceiving a threat, which is triggering your stress hormones. It's essentially an autoimmune response. Your body is on high alert and attacking healthy cells.

    I discovered this after years of misdiagnosis and treating symptoms.

    Figure out what you're afraid to feel/process. That's the root of it.

    • javed33javed
      javed33javed mlb0407

      Posted

      bro how can prostatitis cause body/mind is perceiving a threat, how it triggering my stress hormones. I need help and advice I have been to many Dr and no medicine working for me at all
  • javed33javed
    javed33javed CraigB47

    Posted

    Craig I need some help from you about prostatitis. my my email is on facebook is

    thank you

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • kenneth02358
    kenneth02358 CraigB47

    Posted

    I've only had prostatitis for about 2 months, but its really taking a toll on me. My quality of life has really dropped, constantly on my mind. I hope i can at least figure out a way to manage it, doesn't appear to have a cure from everything i read

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