Kevkos - Here's my Story

[Donknuckles]

Just reading everything ... Just like to hear an update ... Hope you're doing well

[kevkos]

Ok I'm back.
Like Yoink, I wish I could say I took a hiatus from the board because I was on the fast track to recovery. Not so! Here's an update:

I'm currently traveling in SE Asia, right now in Bali, Indonesia. I planned this trip in January 2011, and at that point I thought I would EASILY be over chronic prostatitis / chronic pelvic pain syndrome (actually, I didn't know what it was back then) by this point.

Anyway, I left on March 6th and have been constantly traveling from place to place since then. I have almost completely stopped all of my protocol. The week before I left for my trip was probably one of the better weeks CPPS-wise that I've had in a long time. I REALLY was thinking that it was going away, and the trip would solidify this! But...the day I arrived on Bali, after flying for 24 hours...everything was tightened up more than ever! It felt like my whole pelvis was just locked up.

So after the jetlag wore off things slowly got better. I've had some ups and downs but in this trip, I'm eating far more carbs than I'm used to, drinking caffeinated tea every morning, drinking beer at night, and only a little stretching and no internal work. Symptoms are about average for me now, they're not terrible but my path to recovery now seems further away. I'm definitely enjoying myself on this trip and not stressing much, so I was kind of hoping this would counteract all the bad things I'm doing and the swaying from my daily protocol....perhaps it has to some degree, because I could be in a lot worse shape now.

I'm still taking the any accredited quercetin product which I THINK helps slightly, although I'm pretty sure it's not a cure. Not sure it's worth the amount it costs either. I'll be on this island for 2 more weeks and then off to Singapore, Malaysia, and Thailand for another 4 weeks! Despite chronic prostatitis / chronic pelvic pain syndrome flares I'm really enjoying myself a lot, trying to take my mind off it as much as possible.

Hope you all are well out there, keep your spirits up!

[kevkos]

Quick note:

I'm in week 4 of my trip, I have a few more days in Bali then off to Singapore, Malaysia, and Thailand for another month.

I was doing pretty good CPPS-wise for a while then had a HUGE flare up a few days ago, pretty frustrating as I had started the stretching and even a little swimming again.

I only have 3 valium with me on this trip and took 1/2 half which did the trick in controlling the flare. Definitely feeling better now but I've noticed something, that every time I feel a little bit of stress, it's centered around my pelvis. And for some reason I've been going through little bouts of stress pretty often on this trip (maybe just the typical travel stuff...getting lost, spending too much on something, etc).

I'm beginning to think that at least 80% of this thing is controlling stress. I don't think I'm close to controlling my stress levels at this point, because if I can feel this much anxiety and be able to cause a flare up in a tropical paradise, something's not right!

[latte]

I read all 7 pages of this thread and it reads like my life story with CPPS. I went to Dr. Zeitlin in 2002, Dr. Parsons in 2003, Dr. Wise's seminar in 2004. My advise with my experience goes like this. All the tests they did showed nothing except the cystoscopy done by Dr. Zeitlin which showed severe inflammation in my urethra just below my bladder. No wonder it hurt to pee all the time. The Elavil he gave me helped but it made my hands go numb at night so had to stop it. I must have taken 20 different drugs over that two year period. The only one that helped was Flexeril which is a muscle relaxer. Then tried Dr. Parsons. He only gives out Elmiron and Atarax with heparin bladder instillations. I did over 10 bladder instillations and it did nothing. The Atarax may have helped and I still take Atarax for allergies. Finally my GP gave me 20mgs of prednisone for two weeks and that stopped the inflammation but did nothing for the pelvic tension. Went to Dr. Wise in Sebastopol and Tim Sawyer worked on me. I still use the relaxation tapes from the seminar. I found a PT in San Clemente (Body Awareness) and Chrissie Morgan worked with me over several months and that helped especially the stretches she taught me which I still do. Now I am about 80% with some bad flare-ups but hot bathes and stretching help a lot. It doesn't rule my life anymore, I can live and golf and enjoy myself.

[kevkos]

I read all 7 pages of this thread and it reads like my life story with CPPS. I went to Dr. Zeitlin in 2002, Dr. Parsons in 2003, Dr. Wise's seminar in 2004. My advise with my experience goes like this. All the tests they did showed nothing except the cystoscopy done by Dr. Zeitlin which showed severe inflammation in my urethra just below my bladder. No wonder it hurt to pee all the time. The Elavil he gave me helped but it made my hands go numb at night so had to stop it. I must have taken 20 different drugs over that two year period. The only one that helped was Flexeril which is a muscle relaxer. Then tried Dr. Parsons. He only gives out Elmiron and Atarax with heparin bladder instillations. I did over 10 bladder instillations and it did nothing. The Atarax may have helped and I still take Atarax for allergies. Finally my GP gave me 20mgs of prednisone for two weeks and that stopped the inflammation but did nothing for the pelvic tension. Went to Dr. Wise in Sebastopol and Tim Sawyer worked on me. I still use the relaxation tapes from the seminar. I found a PT in San Clemente (Body Awareness) and Chrissie Morgan worked with me over several months and that helped especially the stretches she taught me which I still do. Now I am about 80% with some bad flare-ups but hot bathes and stretching help a lot. It doesn't rule my life anymore, I can live and golf and enjoy myself.

Latte, thanks for your response. I remember reading another post of yours where you recommended Chrissie Morgan, and I considered making the drive up there. But, I'm so convinced that this is mostly a holding stress thing for me that I have not done it. Plus, I keep hearing so much about the Wise clinic, that if I go I may be able to get this thing under control myself as opposed to PT's and drugs. I may have to go when I get back in May. Anyway, i'm glad you are feeling better. So in summary, you are saying what helped was:

1. Tim Sawyer's work on you.
2. Going to Chrissie on a regular basis for several months.
3. The WA relaxation tapes.

Do you also use the wand? If so, how much do you think that has played a part in your recovery?

Cheers.

[latte]

I never used the wand. For some reason is never appealed to me. What did help a lot was the PT in San Clemente but I had to go for more than 30 visits. I also found that you have to do the relaxation at the same time. If the PT works on the trigger points you have to relax your pelvis for it to have a lasting effect. If you loosen the trigger points and keep going at 100 mph in your daily life it really won't get much better. What helped was relaxation, hot baths, stretching, and PT, but it takes a while. The relaxation is a good forty minutes with the headphones on. Sometimes I would just fall asleep but it feels so good to be relaxed why wouldn't anyone want to do that daily. You have to be committed to the program. I still do the regimen, just not as much as I did years ago.

[kevkos]

Latte, this is great info, thanks! I definitely I'm guilty of going 100mph (stressing about stuff than never happens mostly), so even 2 days after a Tim Sawyer session I can feel everything coming back. I guess my thing will be to get a hold of the tapes (or mp3s) somehow, or, just sign up for the clinic when I get back in May.

[kevkos]

Ok, this hasn't been a HUGE problem for me with my CPPS, sometimes I have to pee a lot and other times I'm like I used to be and can go many hours without peeing. But, the last 5 days or so I have been going like every 20 minutes. I don't know what has brought this on. I also have a cold right now so maybe this adds to it.

Anyway, I'm sure it's been covered a lot on this board, but any specific things I can do about having to pee all the time, or just the usual relaxation and internal/external PT? I've experimented with drinking less water and drinking more water and it doesn't seem to matter either way, I have to pee constantly, and I have that bladder pain thing when it fills, which is completely annoying as I'm traveling.

[we.the.hulk]

Kevkos.
Couple things. Chrissie in San Clemente is a cool lady and is a good therapist. For people like us she does something called visceral manipulation. Google the Barral institute. Essentially it is a method to help the body relieve itself of structural imbalances. I would bypass Chrissie and go straight to the source. Gail Wetzler in Newport is a true healer and is the director of the Barral institute in the states. Barral is a French osteopath. She and Tim Sawyer both studied under Janet Travell. She is pretty amazing. The problem is she has like a 6 month wait period to get in to see her. But, she has a gift. And may be your best bet for the feeling of constant urinary pressure. However, I do feel you can cure this with internal work and the wand. The bladder is the organ of anxiety, so meditation will eventually help this as well. Trust me. I know this is by far the most god awful -pain of this condition.

I can't remember how much internal work you are doing, if at all, but you should start. The insertions around the prostate are a big cause of this sensation.

One of the stretches I really really like for this. Squat on the toilet, feet on the toilet seat, as if to defecate. Relax pelvis. If you can balance ok, grab both buttocks and pull outward and hold. Try both sides, one side then the other..etc. Pulling outward like this is pulling all those muscle up in the rectum. It sounds strange, but has been helpful.

Ultimately, I've found that as my anxiety level rises...the easier my bladder will spasm. The bladder spasm doesn't mean you have to pee. Its just a symptom of anxiety. Fight or flight. Whatever. If you begin to recognize when you "really" need to urinate versus when its a false signal, you will help yourself tremendously.

[kevkos]

Thanks We.the.hulk. It's been an up and down road the past month. I'm back from my SE Asia trip as of yesterday, and for some reason, jetlag causes a big flare for me. I don't even think it's from sitting on the airplane, but something about throwing off my sleep schedule usually gets me.

I think I will try to get in and see Chrissie in San Clemente next. It's closer than Newport and I don't have to wait 6 months. Also, thanks for the stretch idea, I'll give it a shot.

It sounds like you've gone down many paths for this. Are you now in pretty good shape? How many visits did you make to Chrissie, and to Gail? Can I mention that you referred me? My email is kevkos at yahoo.com

As far as internal work, I'm doing what I can without the wand. It seems to usually help when things are really tight/sore down there, but it never lasts very long. I have been inconsistent on stretching since I've been traveling. Stress levels have been pretty low for a few weeks. But, now I'm back in work action and need to get on a daily routine. BTW, can you let me know what your specific routine is these days? Cheers.

[latte]

Kevkos, Great that you going to see Chrissie, she's a fine PT. Yes you can mention my name, she knows me well. I had about 30 sessions with her in 2005 and about 10 sessions last year. I sit in the jacuzzi almost everyday and stretch. I find that I feel better when I am active so I play a lot of golf. Actually can be a bit miserable but after 18 holes feel pretty good. Better not to think about it much if possible. I'm about 80% most of the time. I'll take that from where I was a few years ago.

[kevkos]

Ugh, flare city lately and I was going to see Chrissie, but apparently they need a prescription from "my doctor". I don't have a regular doctor and my urologist wanted to take this whole thing a different direction that I didn't like, so not sure where to get a referral from. Interesting because Tim Sawyer doesn't need a referral from a doctor, and neither did the PT place I used to go to in San Diego. I don't like places that don't allow you the freedom to decide for yourself what you need and who you need to see. Pretty frustrating. I suppose I could just take flights up to the Bay Area once a week to see Tim but that's pretty impractical.

On a related note, I'm going to go talk to a psychologist next week who specializes in mind-body disorders. Should be helpful. But after the first session he runs $100/session.

[latte]

Hello Kevkos, you need a prescription from a doctor so Chrissie can give it to your insurance company. If you don't have insurance you can just pay her the fee. That would be less expensive than flying to see Tim.

[we.the.hulk]

Kevkos,

I didn't need a "prescription" from a doc. Depends on your insurance I guess. I doubled up a couple of times on sessions, so I had to pay out of pocket for one session and it was like $120. (this was 1.5 yrs ago)

First of all, your dr. Shouldn't have an issue writing for physical therapy. If he does go get another one.

I would keep the session with Chrissie. She does a thorough initial session. At most your out $120. No big deal. And, I feel like she had "healing" hands. She has a gift. She may be able to give you a little insight into your situation (emotionally and physically, as would Gail).

I saw Chrissie probably 10 times. Or so. She's great. She can't cure you. You will have to do this yourself. She pretty much did half internal and half "visceral manipulation" (google it and John-Pierre Barral). And then gave out a bunch of PT exercises. Chrissie claims to have seen many of "us", although I doubt as many as Tim. She also says she doesn't advertise for "prostatitis" because she'd be overrun if she did. She talked about opening a full time clinic for pelvic pain people.

Honestly though, I mean, in retrospect, I don't regret going to Chrissie or Gail (Gail is really cool and amazing), I learned a ton, but I don't think I really needed them, especially after getting the wand. And especially after settling into the fact that I had some weirdness, but I was going to get through it and it is really no big deal.

As far as taking flight to the bay area once a week...not practical. From what I can tell Tim never has office hours. Second, why not just go to the clinic, it be cheaper in the long run. Get the wand. Heal yourself. Or get the wand from Europe if you can.

You gotta understand. You need to be doing the work on yourself, its the only practical way. Its the only way. Even if Tim lived in your house, you'd still be better off working on yourself. Its night and day difference. Also, I threw myself into CBT and it was very helpful. Actually still see the lady. I'm in fine shape now. It just takes time and commitment.

My daily "routine" is commitment to "relaxation" in all situations. I've got a mantra that helps me center through all types of stresses. Focus on this moment. Daily meditation of 45 minutes.

My job is sitting. So, commitment to standing and walking throughout the day. I go into a conference room and do the cobra pose (upward facing dog) many times through the day. I use the wand for 15 minutes everyday. Skin roll the bladder area for 5 minutes. I'm back to running pretty much every other day. Weightlifting on off days. Nothing better than natural endorphins. Plenty of vodka.... (joke, come on.)

Sound more "military" than it really is. Just comes naturally now. Don't even think about it.

[kevkos]

Thanks guys, apparently, they changed the rules and you must at all costs get a prescription from your doctor in order to get an appt with her. Not only that, but she has cut way down on new patients so there's like a waiting list for her...they were going to have me see another PT there (can't remember if it was Gail?). I don't really have a regular doctor that I see. Perhaps I could call my urologist and ask for a prescription, but they'll probably tell me to go in and see him AGAIN, which is a complete waste of time and money, and he's pretty hard headed so I may end up not getting what I want. I told the receptionist at Chrissie's office that I was paying out of pocket and she said they still need the prescription. It's stupid rules if you ask me.

We-the-hulk, you're right it's not practical to see Tim on a regular basis. He's not often even there. I guess my best hope is to either do the clinic (which is now looking less likely to be able to do financially than I had thought it would at this point), or somehow find a way to get a wand from Europe (anyone have a link? ;)).

You mentioned CBT. I'm trying a similar route. I found a psychotherapist here that specializes in dealing with and overcoming pain, or "somatic" illnesses. He's got lots of good yelp reviews, so I think he may be able to help with the mental/relaxation side of things, which I believe is probably 80% of my issue. He's $90/session, so yet another expense that I'm having a tough time dealing with, but if it helps, it's worth it.

The skin rolling thing never seemed to do anything for me so I've never done it. I'm actually resuming running again because it's something I used to enjoy at one point and it seems to help as a stress reliever.

Also started taking ½ mg of terazosin again. Oddly, it helps slightly with libido which is one of my major issues from a mental standpoint. I fully understand it's not curing me however (and it really doesn't help with the urinary symptoms).