UCPPS - Prostatitis, Interstitial Cystitis Forum

Web,

It's comments like these "Please be reassured that virtually everyone who gets this disorder eventually gets better" that can help even the most seasoned vets on the board.

D_Man - like you, my flow got so weak at my onset that it took me 5 minutes to urinate. This was because prior to chronic prostatitis / chronic pelvic pain syndrome I would always push hard to void, like I was saving time by getting the urine out quicker. I think the muscles became totally fatigued and caused the weak flow. I have had many sessions of PT and do PT on myself frequently and while my flow is not as strong as before it's about 90%, up from 15% at it's worst.

The dribbling I have as well, and started almost overnight, Tim Sawyer said it was due to a weak sphincter, he suggested that I do Kegel exercises starting out very lightly and if it doesn't make worse,continue. I have not done kegels because I am afraid it will make it worse and the dribbling symptom doesn't really bother me, but maybe worth a try for you.

I take culturelle and citruscell because all the antibiotics permanently turned my bile green, both these supplements keep me regular and feeling good from the IBS front.

Thanks for replies, I appreciate it.

The last two days have been pretty good. I've managed to get out of the house and do things. Things that I would not normally do but but did them anyways (trying to changes my life now, slowly but surely). The hard part of all this is trying to take your mind off it. Sitting through dinner with a bunch of friends, I started to obsess for some reason. The brain is a strong tool. I wonder how much of this is psychological. The L-theanine is pretty nice. Not sure if it calms me down or a placebo effect.

I do feel better. I don't know if it's the any accredited quercetin product but whatever it is I'm getting back to my old self sort of. Is long term use of any accredited quercetin product safe? And why the week off? And do you guys have discounts? It's pretty expensive to ship it here.

I forgot to mention, I smoke. I started 6 months again. This has been hard to quit. Do you think this a major cause. I know I should quit ASAP since of course smoking is bad in general but I find it relaxes me during these times. Your thoughts?

Lastly, I don't mind the dribbling, I know everyone dribbles. I did too back in the day, I just didn't notice it. Sometimes I have good flows (usually in morning when I wake up) I think it's because my body is relaxed. But yesterday I went to the urinal and an old man came in after and then left and beat me. HA. I was a little disappointed but oh well.

Anyway, for all the help you guys have given me, let me give you something that may be of interest to you. Go watch "The Secret" if you haven't already. U can buy it off I tunes. here is the first 20 minutes so you can see what it is all about. http://www.youtube.com/watch?v=_b1GKGWJbE8

The mind is a powerful tool if used properly. And can heal you. I know it's difficult to believe when you get the worst flare up but I've been doing it daily even at my lows.

Alright, I have a new question. And if you guys have any info from the one above would be great! Just want to say thanks. I'm grateful for you peeps. The good news is the last few days have been great! Only one mild flare up (side shaft which seems to be the only pain I get with this thingy ) two nights ago but I slept it off. I've been doing p80x X stretch each morning (download it if you can, and let me know what you think). Love to hear your thoughts.

Ok, peeing techniques. At home I sit, always have. I guess I'm lazy! Near then end lately, I've been giving myself a little tickle to help the rest out and sometimes without noticing I clench those pc muscles. I don't know if this is good or bad. What do you guys suggest? It may be a silly question but I'm relearning how to pee again. Seems like I forgot since I've had this for the last 2 months.

I do feel better. I don't know if it's the any accredited quercetin product but whatever it is I'm getting back to my old self sort of. Is long term use of any accredited quercetin product safe? And why the week off? And do you guys have discounts? It's pretty expensive to ship it here.

Long-term use is safe. The week off allows the body to rest, and is a good idea no matter what supplement you're taking. I was the person who first noticed that during the week off, symptoms would improve markedly, so the idea of cycling the supplement was born. As for discounts, always mention this site to get the 10% discount. Email Quercetin suppliers with any questions about shipping.

I forgot to mention, I smoke. I started 6 months again. This has been hard to quit. Do you think this a major cause. I know I should quit ASAP since of course smoking is bad in general but I find it relaxes me during these times. Your thoughts?

Many men have mentioned that smoking makes symptoms worse. I think one mentioned that it made symptoms better.

d_man wrote: Ok, peeing techniques. At home I sit, always have. I guess I'm lazy! Near then end lately, I've been giving myself a little tickle to help the rest out and sometimes without noticing I clench those pc muscles. I don't know if this is good or bad. What do you guys suggest? It may be a silly question but I'm relearning how to pee again. Seems like I forgot since I've had this for the last 2 months.

Bend the knees slightly and after your done, gently press your perineum ( taint ) to expel the rest of the urine with out flexing your PC muscle to expel...That way you are staying relaxed...

Best

Thanks guys. Every day I feel I'm getting slightly better. Just have to figure out the peeing I also spoke to a lady here in Montreal that focuses on Pelvic Floor Dysfunction. Does the biofeedback, TP therapy and all that jazz . She recommended the same books you guys did (some of clients even went to the Wise/Anderson clinic, with success). She is booked solid though, and is going to call me in the next 4 to 6 weeks. Sweet lady spoke to her for 45 minutes. Hopefully by then I will not need it and the books when they arrive will give me the proper tools that I can apply on myself. I Will keep you guys posted.

Hey guys,

Had a decent week on the Q and started the flower pollen. But today seems to be an off day. Symptoms started last night by sitting on a hard chair for dinner and driving in a snow storm, was tense I guess. Today I also went for lunch with a friend and was in my car for an hour. Not sure if being stressed brought on the flare up or just anxiety. I'm by no where near the pain I had 2 weeks ago. Just a mild aching burning in my shaft. Sometimes I wonder if it's mental and if i'm creating this all in my head now? Perineum doesn't seem to hurt much. Kind of sucks since, I was doing so well this week, with my 50 minutes of daily stretching, long walks and massage. Can, I take Aleve (naproxen) or celebrex while on any accredited quercetin product or should I just sleep this off?

I'm trying to live this Zen lifestyle which is hard, since I was always high strung (tight ass if you will call it) but the reminder of the onset of this gets to me at times. I wonder what if I can't hold my urine at all like in the beginning? Do I go back get more Cipro? I think the answer is no.

Anyway, on positive note, I have appointment with a pelvic floor therapist on the 11th. Am I jumping into this too fast? Should I just keep taking the any accredited quercetin product and chilling and see what will happen in due time?

Thanks guys.

You can take the NSAIDs if you like, may help some. The sooner you get proper pelvic floor therapy, the better.

I held off on the Aleve (naproxen) and advils (after Cipro, drugs scare me). Yesterday, I decided I was going to do nothing but relax. I woke up ate breakfast, stretched for 50 minutes, went for a walk. Sat on the computer for a few hours and around 6PM I started noticing a flare, so I decided to do yoga for the first time in a year with my p90x dvds. Could only do 30 minutes (there is only so much exercise in a day my puny 139 LBS can take now. Man I wish I was 155 again so I can fit into my clothes). After I took a hot bath and bam, flare was gone for the rest of the night. This is puzzling because right now I am about to head out to watch the hockey game (go Canada) and a few hours ago I began getting a mild flare and peeing is back to around 55%. I don't know if the anxiety of driving, the thought of sitting on a hard chair, or not drinking a few beers with my mates is the cause of this but its beginning to make me wonder how the hell am I going to date or travel again. Sorry, I'm just venting but the thought of going on a date with a lovely lady and saying sorry I can't go out tonight cause my penis shaft is burning doesn't sit well with me. How have you guys dealt with dating and travelling since you been diagnosed? I know I could probably use some good CBT but right now between physio, books, massages, nutritional supplements, cushions, Theracane and you get the picture, this is costing me a pretty penny.

Not to sound like a broken record, once again thanks, and hopefully in the future I will be able to help someone just like me.

Here's a little update. Last two days been good. Stretch 50 minutes in the morn and 30 min of yoga at night. Taking 2 Quercetin, 3 Swedish flower pollen (Source Natural), Joy Omega 3 (really high epa). For some weird reason, symptoms come at night for me. I would say in a level 2. 5 pain. Just annoying.

I read on this board about a McGill study/research, so I decided to call. I spoke to the lady and I was about to do it but she mentioned that one of the things the Urologist would need to do is get a sample of my prostate fluid. I told her that I did 2 urine tests and tomorrow I am going to a new urologist who specializes in fertility and stuff ( I know nothing to do with this condition but I will have him check out my little swimmers). Anyway, I decided not to do the research just because of the prostate fluid test. Everything else seemed cool. They do pain tests etc... Do you think it is smart for me not to do the research based on the prostate fluid sample? I'm pretty sure I don't have bacteria, I mean, there are times of the day I am symptom free now. As well I read on here somewhere, I think, to leave the prostate alone.

On the bright side of that conversation, she hooked me up with a pain management/CBT group for people with the same condition. 10 bucks a session for 10 sessions. Beats 150 a pop to go see a shrink! I look forward to that actually, and think it will help with my anxiety.

Lastly, I'm on a total anti-inflammatory diet. Going to test that out for a month or two.

d_man wrote:
I read on this board about a McGill study/research, so i decided to call.

Never heard of this study?

I read it here. I called, the study is still in progress. viewtopic.php?f=45&t=6391&p=35794 I was searching for treatment in montreal

As webslave suggested. Here is my two week update on Quercetin. Last three days have been awesome. No flare ups. My daily routine consists of 50 minutes morning stretch. Long walks and more stretches/yoga at night. I have been getting weekly massages.

I'm taking two prota qs, 3 Source natural sweedish flow pollen, 2 Omega 3's (high epa), Vit ds and some other stuff.

Also started an anti inflammatory diet.

Yesterday, I finally went to a urologist who understands this condition. Told me what I am doing is dead on and not to listen to the other urologist who prescribed me pills (not in those words). Said to do PT and to do some therapy. Also suggested I start dating again because endorphins alone can heal people. I liked his approach. Not a pill popper.

He wants me to get an ultra sound, sperm analysis and blood test. Just to make sure to rule out any other possible causes.

That said thanks guys for putting me on the right path.

Hey guys,

Basically, the last week I have had no flare ups (don't want to jinx myself). I feel like I am almost as good as new. I took all your advice and been stretching an hour in morn, 30 minutes at night. Quercetin, Omega3, Swedish Flower Pollen, Standard Massages etc... I guess the only prob now is mental but I should be starting Pain Management and CBT (ten week course) at the end of the month.

In terms of food, I have been experimenting and no flare ups yet. I even had a glass of red wine over the weekend.

My question is this Thursday I am going to physio with a lady who deals with Pelvic floor dysfunction. If my symptoms are gone or at least I think they are will they be able to find trigger points and or will it help to go? Or is it good to start this while I am doing well?

I think that my main prob was inflammation since the burn was located mainly in shaft. And perhaps the supplements I've been taking have dealt with it? Not sure but whatever I am feeling like myself again :) Going to do a few tests that my uro told me to do to rule out anything else as well. Once again, thanks and appreciate this board since it put me on the right path. I feel like I owe you guys something and who knows maybe start a organization to raise funding for this. Have any of you thought about doing that?

PS. I quit smoking! It's a bitch Nasty addiction!

The trigger points will be there, if you have them, even if you have improved.