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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.

0 likes, 57 replies

57 Replies

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  • howard50192
    howard50192 CraigB47

    Posted

    Hi, all

    I was hesitant to post on here as it looked as if it was going to be confrontational

    After looking at one persons post, but after derek76 saying what I thought I decided to put my three pennies worth.

    My view after spending a fortune on Rye grass seeds and pumpkin seeds (which did me no good at all) and listening to the self proclaimed I can cure it all witch doctors on the Net that for a fee. I decided to go with surgery, every one has a choice

    So if a person decides something does them good they should go with it and only their selves to blame if things go wrong,

    On the other subject of gluten free diet does some one suddenly become allergic to gluten or have they always had an allergy to it, if so maybe Piriton

    Or Chloraphenamine would help ( obviously not if they have an enlarged prostate or urinary problems.

    I hope that this forum can stay as it’s always been, a helpful friendly place.

    • derek76
      derek76 howard50192

      Posted

      I was told by the marvelously named urologist Miss Waterfall after a Cystoscopy for for a kidney problem in 1983 caused by a drug I had been prescribed that I had a slightly enlarged prostate that I should keep an eye on... how does one do that?

      It was not until 1994 that any BPH problems became troublesome and my prostate was by then 75 grms. I refused a TURP waiting for something better to come along and I believe helped my symptoms with Tincture of Saw Palmetto.

      With a rising PSA I had a second prostate biopsy in 1999 that caused an infection that took ten weeks of antibiotics to clear up. Since then I have had two or three episodes of prostatitis a year, Although I have twice since had laser surgery to reduce my prostate I believe that the trauma of the biopsy or the infection it caused  may be the reason for my prostatitis.

    • howard50192
      howard50192 derek76

      Posted

      It seems rather a Lottery doesn't it, all you can do is take as much information on board ( such as here ) listen to what your urologist says

      and after all that then make a decision (which indeed will be life changing.)

      good luck to all what ever you decide.

    • derek76
      derek76 howard50192

      Posted

      Too often the advice from the urologist is for the procedure that he prefers or is the one that the hospital and urology team have decided on. One urologist told me that some had been evaluating the latest GL laser and were pleased with it but that the majority of the team preferred Holep so that is now what they offer.

      As I have said elsewhere the urologists at my local hospital offered me TUMP or TURP and I only found out by chance from a locum that a renal surgeon also did Thulium Laser.

      Many of them will only believe that you have prostatitis if it is the bacterial version. 

    • RonTexan
      RonTexan derek76

      Posted

      Amen, Bro, to why a uro or any Dr chooses certain procedures. And let's not forget the influence, at least in the US, of liability lawyers just hoping some Doctor will think outside the box. And then there's the insurance compainies who will only pay for established solutions to a diagnosed problem.

      A comment about the confrontational tone of some posts; keep in mind that whether we agree or not, whether a certain procedure worked for one and not for another, etc, the real value of these forums is the presentation of ideas that most sufferers will see nowhere else. Just go back to the beginning of this thread and count the ideas and experiences that have been discussed here. You will not find these ideas anywhere else that I know of. Good job.

  • Josem
    Josem CraigB47

    Posted

    Hi, first sorry but my English is not my native language. I am 52 years old and over 25 suffering from this terrible disease. Like many, I have tons of antibiotics prescribed, I tried zinc, magnesium, pollen, sunflower oil and many more thing I can not remember. I have read many forums and I found this a few months ago. When I read the gluten-free diet, I had high hopes because I knew that gluten causes many problems of all kinds, and tried, but without relief. I also read a Mexican who greatly improved once eradicated their Helicobacter pylori, also did the treatment to eliminate helicobacter and nothing.

    I think one month ago, I read Craig's experience and asked a friend doctor prescribe me Diazepam 5mg. I took it at night and in only two doses felt relieved that he had not in years. My golf ball almost disappeared along with the burning-pain, also blood in semen disappeared and now I had a flare but with 4 doses of diazepam am almost 95 better. Diazepam gives me drowsiness as a side effect, but compared to the benefits is all gain

    Graig Thanks for sharing your testimony has greatly improved my life. I believe in the power of diazepam muscle relaxant, relieves pressure on number of structures in the pelvic floor including the prostate and all nearby organs. I'll try to find now a urologist who also handle the pelvic pain and I prescribe a drug -if it exists- with the same result, but without the side effects of Diazepam.

    Thanks Again Craig, God Bless you, I will keep reading this post to see how everything evolves.

    José

  • mark81403
    mark81403 CraigB47

    Posted

    I have been hearing a lot about glutin being the cause I started fasting 56 hours ago and will try to go 10 days I have had so much trouble with so called prostatitis that I bleed and pass clots when I'm at my worst I have read several post that men recover quickly after going glutin free so I'll let you know how I feel during this 10 day fast if I feel a big differance I will eat one non glutin food group at a time and re establish a diet from there cpps also can play a part in my case I found out my pelvis is twisted so I'm doing inversion theropy in hope it will help
    • RonTexan
      RonTexan mark81403

      Posted

      Mark, if you stay absolutely gluten-free for ten days you should see a difference in your symptoms if you are ever going to.  Be sure to post your experience here, you could be helping hundreds of sufferers.

      Good luck, Ron

  • richardd77
    richardd77 CraigB47

    Posted

    Craig - if you are still in the forum ....

    I have recently been diagnosed with Prostatitis. There is a lot of evidence surfacing that for many people it is not the prostate gland that is the cause at all it is the pedendal nerve that has become agitated. Do look into this.

    I was in a bad place for some months but came across Pudendal Nerve Entrapment, Pudendal Nerve Neuralgia etc. The symptoms are identical to most of the diagnoses for Prostatitis. I am following the suggested regime of non-aggravation of that nerve. It isn't easy. Little or no sitting. Lying on a mat. Selected exercises that don't aggravate pudendal nerves. eg swim freestyle not breaststroke. After a few days I started to improve. I mean really improve. It is not a quick fix.

    I have written quite a lot in other threads on this site.

     

    • derek76
      derek76 richardd77

      Posted

      In that case we should be hearing from women with the same symptoms as Pudendal Nerve Entrapment is not just a male disease.
    • richard28138
      richard28138 richardd77

      Posted

      Hey richardd77.  I think your on the right path.  I too came across the same results.  Anxiety, sitting, stress pressure all seem to cause pain.  Like in some people they get a tension headache, we get the same headache but in the pelvic or prerianal area, for which the predendal nerve becomes agitated.  

      Don't do kegel excercises...LOL!!!

    • fj20848
      fj20848 richardd77

      Posted

      Hi Richard

      I also have same troubles when i do exercises like jogging. My question is: does sex also aggravate pudendal nerve?

      Regards

      FJ

  • dale10928
    dale10928 CraigB47

    Posted

    My history is similiar,16 years of increased antibiotics and some pain medicine(tramadol for me works)

    . I recently moved to kansas and informed my new doctor of my history. For three years things went reasonably well and then he started resisting prescribing antibiotics and sleep meds

    . Yesterday I went to renew sleep meds and he informed my he was no longer going to treat me for infections, pain or sleep and I needed to find another doctor. He also suggested he believed I was shopping doctors and abusing my meds.

    Dont know what triggered that as i use 4or5  subs of halcion a years and hes only gave me tramadol twice in three years

    . I did need a molar extracted and was scheduled for removal next morning and didnt mention a thing as he was very nasty to me when he entered the room. Maybe I didnt look to well and he assumed.

    For me I sit on ice packs anytime I can and freeze water bottles and place between legs. I must look silly and it doesnt help a socisl life, but there is much relief.

    I use levaquin when I get sick or feel infection moving to new areas of my body.

    But I have found the pain will never decrease while on this med and stop as soon as possible(when others parts like kidneys etc stop hurting) After a day or two  off of the antibiotc I might have a couple decent days and then the pain is back and the trip to hell continues.

    My doctor fired me yesterday and now am searching for someone who doesnt think I get my kicks on antibiotics and sleep meds.

  • renton27907
    renton27907 CraigB47

    Posted

    A suggestion/question for the CPPS community : Has anyone tried using "poppers" (amyl nitrate, inhaled) for immediate, short-term treatment? I've had some success in this area, but have never seen it mentioned before.

    Amyl nitrate (or variants) sold as poppers comes as a small amount of liquid in a glass vial that you inhale (only; don't touch). It opens up the blood vessels and relaxes muscles in the pelvis. It's been used for decades as a "sex enhancement" gimmick, without any reported side-effects. Overall looks pretty harmless. It has a pretty short-term effect, just a few minutes, but that might be enough for some. It's usually targeted at the gay community because of its helpfulness in relaxing certain muscles.

    Anyhow. When used shortly before ejaculation I've noticed that it's much easier for all those pelvic muscles to work as-intended, no mixed-up signals or over-tightness or muscle contractions firing out-of-sync. No pain afterward (a big win for me). Much more "complete" ejaculation, and a much improved experience.

    If anyone looks into this further (besides me) would be helpful if you could post your results here for others.

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