Hello after at least a year of not checking in here I thought I owed it to everyone here to check in and give some encouragement. For those of you who don't remember me I was one of these fairly severe cases. In 2006 I was off work for around 6 months, in bed for around 3 of those. The docs tried 3 ops on me (prostate related and all for nothing) and I took s*** loads of pills.
In the end I phoned the author of the headache in the pelvis and spoke to him, he reassured me my case sounded like the typical case they could deal with and I started looking for funds to be able to fly out there from Spain. In the end I started seeing a local physio who was very well recommended and also very interested in my problem and who assure me had seen other patients like me.
Anyway I started seeing her the beginning of 2007. Throughout 2007 I went twice per week to physio at my own expense, no insurance would cover it. I also started getting off all medication and was down to just using paracetamol and codeine when I had lots of pain. By the end of the year the frequency had gone and most of the pain was gone. I still had flares but only once per few weeks.
I now am down to physio once per 3 months and I am pain free 98% of the time. I get a tickling feeling sometimes and if I am silly I can get a flare but it is nothing I mean NOTHING compared to what I had. Frequency is completely normal and my brain is even blocking out the thoughts that I was ever ill, I am like a new person and neither myself nor my family even thought this possible.
My physio tells me my body is completely different to how it was when I started and I believe she is right.
Please be careful which docs you listen to, they aren't well informed about this and they can do more damage than good even when they mean the best. I ditched my first and second urologist and it was the third one who had finally told me he didn't think I had anything wrong with me (at least in the prostate). Last time I went to see him he said I had the 3 ops for nothing and he didn't want to see me till I was 50 (another 15 years time).
Anyway I thought I had to make the post just to try to encourage people to believe in the physio side of things, the mental side of things etc. It will work but it will take time and dedication.
I have beat this....
I have beat this....
Age:33 | Onset Age: 30 | Symptoms: burning urethra after urinating, followed by rush to urinate again, frequency, pain under left testicle, perineum pain. | Helped By: NSAID's, Hot Bath | Worsened By: Stress, Sitting and unknown reasons (seems to come every 2 weeks).
Re: I have beat this....
Thank you for posting that, means a lot and gives us some hope of light at the end of the tunnel. A success story if I ever read one.
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
Re: I have beat this....
Hi Brett,
Thanks very much for returning to share your success story. It's all too often that we hear of folks undergoing unnecessary surgeries, but I'm thrilled that you were able to bounce back with physiotherapy!
Thanks very much for returning to share your success story. It's all too often that we hear of folks undergoing unnecessary surgeries, but I'm thrilled that you were able to bounce back with physiotherapy!
I am not a physician. This is not medical advice. Consult your doctor!
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
Re: I have beat this....
Great news. another guy who has beat this thing!! 
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better
Re: I have beat this....
Nice one 
Not medical advice: Read my progress to date : Read about my W-A clinic visit
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation