Hi folks,
To be completely honest with you all, a few weeks back, I suffered a terrible relapse in my condition. We're talking agonizing, unable to sit, ready to surrender type relapse. My physical therapist - who still believed I had muscular problems - referred me to a contact of hers at University of Miami to rule anything out and get the pain under control.
It's not easy to go on pain management, but if you're one of those Floridian CPPS'ers who has to, I would really recommend Dr. Abdi at the University of Miami. He is the professor of anesthesiology there, as well as the head of pain management. Very well-respected guy, speaks at international conferences and what not. More importantly, he has a working knowledge of chronic prostatitis / chronic pelvic pain syndrome and pelvic floor dysfunction. Checked me externally and internally during his physical!
He's a really nice guy who took his time with me and honestly seems to care. He agrees with my PT that my problem is muscular, but has been working with me on (to date, non-opiate) medications and methods to manage my pain. It's a long process, but he has always been available to me as we work through it. Soon, at his advice, I will return to PT.
Just a resource I wanted to share, for those of you who must go this way. :)
Dr. Salahadin Abdi, University of Miami
Dr. Salahadin Abdi, University of Miami
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: Dr. Salahadin Abdi, University of Miami
You're in good hands...Glad to read that you have found a good doctor that understands our patient group...Hang in there Jay... 
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I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
Re: Dr. Salahadin Abdi, University of Miami
Hi Jay
Sorry that you're going through such a bad flare. You'll bounce back but it's a horrible knock to the system when it happens.
Richard.
Sorry that you're going through such a bad flare. You'll bounce back but it's a horrible knock to the system when it happens.
Richard.
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
Re: Dr. Salahadin Abdi, University of Miami
Jay - I was disheartened and sad to hear that you had relapsed to the point where you've been bedridden. You've been such an inspirtation, educator and encourager to so many of the people on the board.
I'm hoping that you will begin to heal again and make continued progress.
My thoughts and best wishes are with you - Eric.
I'm hoping that you will begin to heal again and make continued progress.
My thoughts and best wishes are with you - Eric.
Age: 49 | Onset Age: 43 | Symptoms: Some overactive bladder symptoms | Helped By: Hot Baths, relaxation, a little valium, exercise / weight loss | Worsened By: stress, possibly diet, possibly...(fill in the blank)