UCPPS - Prostatitis, Interstitial Cystitis Forum

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

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)

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.

Hi there,

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.

Rhemium wrote:Not sure how many of the old timers are still around.

I haven't checked in for a while, but you know - cold winter = flare ;-)

Hi Dave,

I was wondering the same thing that Mark commented on...

Best

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

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 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!

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!