Some of you may remember me from back in the sci.med forum days. Good to see Mark still fighting the good fight and educating the masses. I'm sorry for those of you who are new to this.
Anyway, I started perusing this forum and its predecessor in 2000 when my symptoms first started. I was quite active for a couple years. By 2003 my symptoms had plateaued to the point where I stopped visiting the board.
Nowadays I still have symptoms. I can live with it, though. The only thing I do regularly to treat my symptoms is constantly sit on a donut cushion. For me, this is a must, along with avoiding constipation.
I lived through the hell most of you know all to well, and made it through. I would estimate I am 70% and have been for years. I can live with that. I eat what I want, still play sports (I'm 38), am married, have a busy law practice and chronic prostatitis / chronic pelvic pain syndrome has become just a part of me. At its best it is a minor annoyance. At its worst, a literal pain in my ass.
Unfortunately I do believe it has impacted my sex life. No ED or anything like that, just an overall exacerbation of symptoms afterwards (for days, sometimes). Oh well. I'm 38 and married so it's not like I'm 23 and single and looking to score. lol
So, I thought I'd check in. Not sure how many of the old timers are still around.
Hang in there, fellas. My case was a nightmare for 2 years. I saw Shoskes and countless others. Took Quercetin, broccoli broth, this and that...not sure what helped, really. Time probably helped more than anything.
I practice Social Security Disability Law and am still waiting for my first male chronic prostatitis / chronic pelvic pain syndrome client, despite representing 500+ clients over the years. For some reason I figured I'd have bumped into a few by now.
Take care, folks. Don't give up. Word up, Mark.
Dave
Hi there - update
Hi there - update
Age: 41. Onset: 28. Symptoms: perineum burn and urinary. Musts: donut cushion and stay unconstipated.
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webslave
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Re: Hi there - update
Hey Dave, long time no see! 
I find myself wondering if you'd be able to get from 70% to 95%+ if you looked at some of the new stuff (trigger points, stretches, skin rolling, meditation, relaxation training like paradoxical relaxation, etc)
I find myself wondering if you'd be able to get from 70% to 95%+ if you looked at some of the new stuff (trigger points, stretches, skin rolling, meditation, relaxation training like paradoxical relaxation, etc)
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Re: Hi there - update
Hi there,Rhemium wrote:I practice Social Security Disability Law and am still waiting for my first male chronic prostatitis / chronic pelvic pain syndrome client, despite representing 500+ clients over the years. For some reason I figured I'd have bumped into a few by now.
I just won my SSI case for chronic prostatitis / chronic pelvic pain syndrome late last year, but it was a long, frustrating battle. Two rejections through SS and, after waiting two years for a date, victory by going before the ALJ. I believe it was not only my symptoms, but consistent and regular documentation by respected physicians (I'm treated by the UoMiami health system) that saw me through.
To be honest, my lawyer had never heard of chronic prostatitis / chronic pelvic pain syndrome before I went to them, and theirs is the bigtime SS law group for our area. I was their first case. I'd guess that most men either get better before needing to go this far, or they're too ashamed to admit that they need the help. It has been a lifesaver for me, a guy who had no insurance or money with which to take care of himself. Nice to not be a burden on my parents.
My biggest obstacle now is understanding the system! There are so many complexities and rules, and of course, nothing's ever made clear when you talk to the SS office. At times, I hesitate to use the money because I don't know if what I'm looking to spend on is permitted. Drives me nuts.
Thanks for checking in. I hope you visit more often. The guys always need encouragement from those who've been there.
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: Hi there - update
I haven't checked in for a while, but you know - cold winter = flare ;-)Rhemium wrote:Not sure how many of the old timers are still around.
Richard
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!
I'm not a medical expert. My comment is opinion. See your medical professional.
Re: Hi there - update
Hi Dave,
I was wondering the same thing that Mark commented on...
Best
I was wondering the same thing that Mark commented on...
Best
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
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: Hi there - update
Hello webslave
can you please connect me to the attorney who is having the handle Rhemium in this thread? I am urgently looking for some help with Social Security application. I have got around 10 days to respond because they did not send their letter of denials to me in time. I can provide my email ID in the public forum if needed or am assuming you will have to bother to communicate via private messaging. Thank you
admin comment: I have sent your message to rhemium; it's up to him to respond to you if he wishes
can you please connect me to the attorney who is having the handle Rhemium in this thread? I am urgently looking for some help with Social Security application. I have got around 10 days to respond because they did not send their letter of denials to me in time. I can provide my email ID in the public forum if needed or am assuming you will have to bother to communicate via private messaging. Thank you
admin comment: I have sent your message to rhemium; it's up to him to respond to you if he wishes
Age:36 | Onset Age: 31 (chronic incomplete evacuation since 29) | Symptoms: Anal fissure (3); Pain in the rectum. Left Testicular pain started in August 2007. Professional PT (5 sessions) in June 2007. Stanford/Wise-Anderson Protocol in July 2007. Back to professional PT from Dec 17 2007 onwards twice a week; Dry needling once a week since March 06 2008. | Helped By: Sleeping; lying down; Thermotex infrared heating pad | Worsened By: Any activity; Medications Lyrica 75 mg* 2, Elavil 10mg Supplements; Cod liver oil ; Natural calm started 02/15; Vitamin B12 started 02/16;Vitamin D 1000U 03//08;Glucosamine+hyaluronic acid+MSM 04/08 Bed ridden since August 2007; Working from bed since Dec 2007 ;Botox done 100 units 04/03/08;RAST for wheat/rye/oats/milk -ve. Dairy free since 04/20/08. Gluten free since 04/25/08;Tried without success so far: Baclofen, PEMF machines, pranic healing reiki ;
Re: Hi there - update
I tried a donut cushion and it didn't really work for me, but avoiding constipation definitely helps me. I try to stick to a high fibre, low fat, diet now to make sure I have regular BMs. I went on vacation this summer and my diet was awful, and it took me about a week to get back on track. I had a really bad flare that lasted 3 or 4 weeks after that!Rhemium wrote: Fri Jan 28, 2011 7:02 am The only thing I do regularly to treat my symptoms is constantly sit on a donut cushion. For me, this is a must, along with avoiding constipation.
I find having All Bran Buds for breakfast every morning (Mixed with porridge or cereal) helps to bulk up your fibre consumption. Only 1/3 of a cup of those is 13g of fibre - About half your daily requirement!
Age: 43 | Onset Age: 33 | Symptoms: Burning in urethra and tip of penis at meatus. Lower back pain and occasional dull ache in groin & testicles. Pain in coccyx and left side buttock when sitting | Medication: Quercetin 1000mg, Omega 3, Turmeric 1500mg, Shilajit Extract 400mg, Ashwagandha 920mg, Glucosamine/Condroitin | Helped By: stretching, rest, light exercise, sitz baths | Worsened By: sitting for long periods of time, driving, stressful situations | Comments: I'm 90% better and don't experience much burning anymore, but get the occasional flare. My main problem now is the sitting pain, which can be quite debilitating at times. I'm sure it's something to do with the exercises & stretching I've been doing as I didn't have this problem a year ago!