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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
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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