No pain - just constant sensation of needing to urinate

[webslave]

non-spicy turkey chili .. strawberries and an orange.

Spices + acid foods can irritate the bladder and urethra.

[CMT23]

Yoink, sorry to hear about your flare. It sounds like there is a lot of hope as you have not tried many of the medications / supplements that have helped a lot of people and you have not yet followed the Wise / Anderson Protocol religiously as seems to be required at least for 6 months or so.

We have some similarities and differences. No foods seem to effect my symptoms. Alcohol makes me feel good for an hour and then horrible for 3 days (even a very small amount). But perhaps the root cause in both our cases is the muscle tension and then everything that happens after that is not so relevant. I know in my case that I feel pretty satisfied that I have ruled out everything else and by watching my symptoms closely it seems clear that muscle tension / anxiety are behind my symptoms.

I am interested that your PT seems to think that flares may be avoided by going very light early on. I will run this by Tim Sawyer when I see him later this month. The entire program is doable in my eyes outside of recurring multi-day intense flares. When I had a go with the prostate massager, each time there were about 3 days where I seriously considered going to the emergency room and asking for morphine. If one can go easy on the internal PT to begin with and in this way avoid flares, then the entire protocol becomes more appealing.

Keep us updated. I will do the same.

Best of luck!

[yoink15]

CMT23,
So I'm taking four supplements right now. any accredited quercetin product and Pollen Aid, and Cytoprotek and Prelief. I just started the latter two today since I've really been tracking my diet and notice that acidic foods and alcohol hurt me. I figure I'd give those two a try and see what happens. I also tried my first dose of L-Theanine last night. Wasn't sure how it would affect me...and even after taking it, I'm still not sure it affected me at all. If anything, I felt a little disoriented. I didn't really feel how I expected to feel, which I guess was "quieted down and peaceful." That..really didn't happen.
So I wanted to ask you exactly how you're doing your protocol, and how often you do it (webslave you can chime in too).
I'm trying to do the following routine twice a day (but sometimes I can't do it in the morning...only at night).
When I wake up at noon (or come home from work at midnight...I work the nightshift), the first thing I do is hop in the bath. I soak for about 20 minutes and do skin rolling in the bath. Then I get up, shower off with soap and clean up, and then proceed into external trigger point massage with my Theracane. I do that for about 10-15 minutes and proceed into about 5-10 minutes of stretching. Now I suppose I should do internal massage next but I'm holding off for now until my PT reaquaints me with my internals (on saturday). After she does that (and finds the trigger points) I'll start up my own internal PT with the Wise-Anderson Protocol wand. Then after doing my stretching, I go into one of Dr. Wise's relaxation tapes. I listen to the whole side of the tape. Then I start my day (or if at night, watch TV / computer before bed).

So that's it. Bath, skin rolling, external TP, internal tp (3 times a week, after saturday), stretching, and then relaxation with a tape. Does that sound right? And is once a day enough? Twice a day required? I don't know if I can fit twice a day in EVERY DAY (probably only 2-3 times a week for a twice a day routine).

Thoughts?

[carld]

CMT23, Bonnie was my therapist back in 2006 and she was very helpful on pelvic floor dysfunction...

Yoink, L-theanine has been a big help to ease anxiety and I only take it as needed...

Alpha blockers in my opinion do nothing to ease the sensation or feeling of having to urinate when you have pelvic floor dysfunction in my experience...

Elavil in small dosages...5 mg and 10mg is helpful short term. Make sure you eat a diet that's higher in fiber and drink plenty of water.

My starter list is an easy way to read what I support and I believe worked for me to a path that my condition is basically an after thought and now that my anxiety is under control...when I do have slight flares or some discomfort...I can ignore it and charge hard in life but in a relaxed way as I always say!!!!

Best

[CMT23]

Yoink, I basically do all the supplements that I mentioned before and then 20 minutes relaxation in the morning and again in the evening. Evening I do at least 30 minutes of stretching focusing on groin, hamstrings, hips. I use a soft ball and lie on my back and side placing the ball right in the spots in the hips where I always feel tight. I also get deep tissue massage and chi nei tsang stomach massage once a week (google it).

I imagine this will all change a bit once I go to the clinic.

I've been taking L-Theanine for 4 months. I don't feel any huge difference, but perhaps I don't get anxious so easily.

I don't think it is wise to write off Alpha Blockers before trying them for a month or so. Many people seem to have had some reasonable results. If they work, great. If not, it's another thing to cross off the list. As with Elavil, it was worth a try but made me feel suicidal and symptoms were no better. Of course not everyone reacts to the same medication in the same way.

[carld]

CM23,

I disagree with you on alpha blockers...The benefit in my opinion is anecdotal at best. No peer reviewed published studies that show a marked improvement in pain and discomfort when using alpha blockers. Just an improved urine flow in my case and I took them for nearly 2 years!

[CMT23]

Hi Carl,

I think the problem is that we all don't have the exact same thing going on. Some have pain, some don't. Some can barely sit, some have no issues while sitting. Some experience flare ups after eating certain foods and some don't. So if the condition is not identical I don't know how you can just disregard Alpha blockers for everyone here. Even in this thread there is someone who said that they started helping after two days.

Similarly, I don't think any one medication can be recommended outright. For example I took Quercetin and l theanine for 4 months and did not feel any amazing turnaround. I continue to take the latter. Elavil and Neurontin did not help me while others report good results. Tramadol made me feel great for a week, then stopped working completely. I understand others have been on it long term with good results.

Anyway, my point is that with these symptoms it seems that one has to experiment and find what works for them. In the end it seems that reducing muscle tension and anxiety is the one thing that does help the vast majority of the people here.

Best of luck.

[yoink15]

Hello all! It's been about a month since I posted and I wanted to give everyone an update on my struggles with this awful affliction and offer advice on things I've learned and also ask some questions.

So at the beginning of August, I threw myself mind and body into my own version of the Wise-Anderson Protocol. I believe I am making small, baby-steps of progress. At the end of July, I felt that my pain and frequency was so bad that I was having panic attacks daily. The catastrophic thinking was consuming my life and I was becoming desperate. I needed to focus on something good to do. So here's what I did.

I started every morning with a hot bath. After soaking for about 10 minutes I go into some skin rolling. Then I get out and do external trigger point massage on my lower and upper abdomen. The good news is that I really can't find any real big external trigger points anymore. Then I go to work on internal trigger point massage. I've been using a vibrator that's marketed as a "prostate massager". It's about 8-9 inches long and the tip curls up like you would curl your finger...and the whole thing vibrates. I usually insert that thing into my anus and let it vibrate without touching it for about 10 minutes, and then I grab it and begin to try to manually push it around inside my rectum. I have real trouble finding anything like a trigger point in there, but I know they exist because my PT Bonnie Cardenas has found HUGE ones in there (more on this later). Then after about 10 minutes of that, I stop, clean up and go right into one of Dr. Wise's relaxtation tapes. Then I go to work. I do the exact same routine when I get home....so twice a day.

I was able to do that for the better part of two weeks until the morning routine go to be a little too much for me, so I started just doing it at night. I saw some reduction in symptoms...I'm not having panic attacks anymore so I know that must be a good sign. Also, I'm not taking any supplements or medications...although I just read on another post tonight that I should be taking multivitamins because a lot of chronic prostatitis / chronic pelvic pain syndrome sufferers are vitamin deficient (I did not know that!)

I'm seeing a PT named Bonnie Cardenas once a week. She's a fantastic pelvic floor therapist in Valley Village and she's found a couple of huge trigger points in my pelvis. One in particular is enormously painful...it's on my right side, inside and on the "top"of my pelvis (if I'm laying down...basically on the right side of the base of the penis, behind the penis...if that makes sense). When she puts pressure on that one, I go through the roof. Both her and my guess is that little spot is causing 75% percent of my urinary frequency and pain. I have other tender, tight spots around the inside of my pelvic floor but nothing like that one. I've see Bonnie three times and each time that trigger point is just as sore as before. I guess it's gonna take maybe 10-15 sessions (once a week) before I feel any change. Does that sound about right to you guys?

The other interesting thing I've learned is that my condition appears to be linked to ejaculation. I know there's a lot of back-and-forth on this board regarding just how much ejaculation is good or bad for the pelvis. Well I can say that for me, less ejaculation is better....up to a point. I've found that if I go without ejaculating for a whole week, my pain symptoms go down, but my urinary symptoms slightly get worse. Until I ejaculate on that 7th day. Then everything switches and my urinary frequency symptoms get better but my pelvic muscle pain and tip-of-the-penis pain get worse. It seems to be an either or situation! BUT...if I ejaculate twice in the same day...OMG...it becomes a flare of epic proportions that nothing makes better. I did that on Sunday and I paid for it with a whole night of no sleep.

CMT23, I know we had talked earlier about internal PT and flare ups. I can say with confidence that Bonnie does internal PT on me and it does NOT cause a flare up. I think if you find a good PT you'll be fine. And also...I believe you had asked what it feels like for a normal person to have internal PT work done...well I sorta have some data on that. Apparently there is one portion of my pelvis that Bonnie says "feels relaxed" and I have no trigger points in that area (it's my lower left side). When she puts pressure in that area with her finger...I literally feel nothing. I can't feel her finger, I can't feel pressure, it's like she's not even doing anything in there at all. However, if she does that exact same thing on my *right* side, I feel lots of pain and I can feel exactly where she's pressing. So it appears that a healthy, normal pelvis should have no pain when someone puts pressure on it internally. Does that make sense?

The frustrating thing is that I can't find these trigger points internally on my own. Not with Dr. Wise's wand, a vibrator or my own fingers. It appears I have to rely completely on my PT to relax my internal points. I simply can't reach my own internal points!

The most troubling thing for me right now is the length of time required to feel better. I mean, I've been at this for a full month and I've only improved slightly. I guess my goal is Christmas. I'm hoping I'll feel much better by then. I just need someone to tell me that the road is a long one (months, not weeks) and that I need to look 6-8 months out for relief. This will help me realize that I'm not wasting my time doing PT that doesn't help.

[webslave]

I just need someone to tell me that the road is a long one

I think we've mentioned that the road to getting better is a long road many times, Yoink.

[CMT23]

Sorry for the very late reply Yoink. I've been to America and the clinic in Santa Rosa. It was a very good experience and very refreshing to speak with experts who aren't the least bit surprised at the symptoms I am experiencing and who can demonstrate what is behind it and who can offer a logical protocol to resolve the symptoms.

It was very interesting that many of the people there had similar personality traits - tend to be tense, worry, think too much - whatever. Initially I really wasn't happy that I had to share this problem with others. I wanted to see David and Tim and be done. But in the end, it was very useful to meet other people who have such similar experiences as my own. As you know these symptoms can be very isolating at times and it was good for the first time in 15 years to be able to discuss the symptoms and experiences openly and see that many people out there are in a similar situation.

The PT with TIm was really very straightforward with the trigger points found high up on the anterior portion of the Levator Ani muscle. Even extremely light touching here exactly duplicates my symptoms. There were no flare ups. I think this happened before when I went at it very rough with a prostate massager.

The internal wand is excellent and I am able to reach all the spots and actually view the level of pressure that I am applying. For those of you that have it, away from a trigger point, I can go to 37 without any discomfort at all. On a trigger point, 1 is enough to bring me to a level of 5 on a pain/discomfort level of 10. It was excellent to see this demonstrated. It leaves no doubt in my mind that this is a muscular/nervous system issue that can be resolved through the protocol.

The relaxation is time consuming, but I have been able to do about 30 minutes 2 x day thus far. I have just worked that and about an hour of stretching into my day as something I do - just like brushing my teeth. It just takes longer.

As far as expectations, I am looking at this as a 12-24 month project. I try to envision 15 years in my head. I have dealt with it and managed it this long - so I will be okay for a year or two more. Of course I do have a tiny bit of doubt in my head - I think that stems from so many failed attempts in the past. But this is honestly the first approach that makes sense and that can be demonstrated with the wand and with how my symptoms behave after a hot bath, or during stress etc.

I'm not on any meds, although I take plenty of supplements. I take one Klonopin when things are really rough, but as long as I take care of myself and maintain my routine, that is not more than a couple times a month.

I'll come back and update every couple of months. Best of luck!

[CMT23]

A quick update. I'm about 45 days into the protocol. I do stretching twice daily for about 45 minutes each time. I do the relaxation tapes twice daily for at least 30 minutes each time - but don't usually make it to the end of the tapes. I do the wand three times a week.

It seems that I can take a little more pressure with the wand so maybe that's a sign of a slight change. Before even 1 on the meter was enough to put me in serious discomfort as my symptoms were exactly duplicated. Now on the same spot it takes 3 or 4 to get to that same feeling. I don't flare up from the wand so that is good.

Overall I would say that I have perhaps had more windows of feeling okay (not symptom free) and fewer windows of feeling absolutely horrible. When it is feeling ok, it's easy to tell yourself that everything is working and you are on the right track. When it is feeling horrible (like now and for the past few days) it's more difficult to keep that same attitude.

If the protocol is helping, why do I feel so bad again? But of course they tell you to expect it to go up and down, not to just get better and better.

Nevertheless, it's tough to dedicate so much time (and hope) to something and then have days where you are in serious discomfort. At any rate, it all still makes sense to me so I will truck on and try to remember that if this is a 1 year process, I am only about 10% of the way in.

[webslave]

During my time of recovery, flares were the norm. This is unlike the typical sickness, where you get better and stay better, end of story. This is like an oscillating wave where the amplitude lessens over time.



The x-axis is an arbitrary time-scale, say weeks to months.
Note that I had a very bad case, that I only treated my internal trigger points for a short time, and inexpertly, that I did not use any accredited quercetin product (quercetin) until I was half better. These circumstances may have delayed my cure, yours may be faster. That said, an oscillating course is the norm.

[CMT23]

Thanks for this Webslave. It makes sense intellectually, but the challenge of course is to stay positive and stay on track when seemingly out of nowhere you experience huge discomfort for days at a time and don't know when it will ease up.

At the end of the day, at least with the protocol, for the first time in 15 years, I don't feel that I am blindly following something with the hope that it may help. The protocol actually makes sense and fits with the experience I have had with these symptoms. I'll keep everyone updated. Thanks again.

[yoink15]

Hey CMT and Webslave and everyone else, I thought it was time to check back in and update everyone on my travels with CPPS.

Well, these last two months (September and October) have been like one long slow-motion nightmare that I hope that I'm finally just waking up from.
In early September, my symptoms got so bad I had to take medical leave from work. I had anxiety, insomnia, and incredible pain that left me unable to eat or sleep. I lost 15 pounds. I leaned heavily on my wife and family for support. I did a lot of crying. I know this condition isn't fatal but as a 35 year old man I cried more and felt scared more than I'd ever felt in my life. I just couldn't keep it together. I felt like I was at the end of my rope.

The Elavil and Hytrin that Dr. Zeitlan prescribed me did nothing at all. On the contrary, I think they hurt me a lot. The Elavil gave my *horrible* suicidal thoughts that really sent me into a catastrophic thinking spiral. The Hytrin gave me zero symptom relief and actually lowered my blood pressure to about 70 over 50, which is low enough to give you "hypotension"...I got dizziness and fatigue. So I stopped taking both medications.

I was seriously beginning to feel there was no hope left for me. However, I continued on with the Wise-Anderson Protocol.

That was until the middle of October that I started on an anti-anxiety drug called Buspar. I really do think this drug did wonders for me because it really took away a lot of the anxiety that I was having over my chronic prostatitis / chronic pelvic pain syndrome and it helped me start to eat and sleep again. I still have some sleeping issues (I can only sleep about three to four hours at a time before I have to wake up to pee, and then I only sleep for about another one or two hours after that before I just can't sleep anymore). I also still have some appetite issues...I never feel like I'm hungry even though I haven't eaten in a long while...but when I do eat I usually eat well....it's just getting started eating that's the hard part.

However, here I am now at the end of October and I think I'm starting to emerge from this 60 day long flare, or whatever it is. My pain symptoms are finally starting to subside a little (from like a 6 down to like a 3 or 4). I credit this to several things. First, I've been aggressively doing the Wise-Anderson Protocol since I've been off work on medical leave for these seven weeks. I do stretching, hot baths, internal and external massage and mediation. Specifically, the thing that REALLY started to help in just the last two weeks has been the paradoxical relaxation meditation. It took *FOREVER* to even get a grasp on how to do it right, (focusing, not falling asleep, really following Dr. Wise's guided instructions to the letter) and by doing two hours a day diligently, I started to feel some symptom relief. I do it once in the morning or afternoon and once in the evening. I think that the tapes that you get at the end of the Wise-Anderson Protocol clinic in Santa Rosa are *critical* to the recovery from chronic prostatitis / chronic pelvic pain syndrome and I think many people just discard them because they don't understand the process or it takes too much time.

The other thing that's helped me a lot is the internal PT that I've been doing with my therapist Bonnie Cardenas. She's good and has been working with me twice a week to help de-trigger-point my pelvic floor. However, I had a real breakthrough this week....my wife and I took a short trip to San Francisco and while we were there, I made an appointment to see Tim Sawyer. Tim is such a super nice guy and I truly believe he is the number one human being on planet Earth who knows the most about internal trigger points and chronic prostatitis / chronic pelvic pain syndrome massage therapies. The one hour that I spent with him was worth a million dollars to me. Tim did an evaluation of my pelvic floor and found a trigger point that both me and Bonnie Cardenas had missed this whole time. And man-oh-man is it a HUGE one. I believe now that this one trigger point is responsible for about 80 percent of the pain and misery that I've been suffering through for the last four years. I have a super tight and tender trigger point way, way high up on the anterior levator ani muscle on the right side...and it's directly next to my prostate. Tim said he felt it and it felt like a rock and was probably pulling really, really hard on my prostate. That's why I'm having so much pain with urination, frequency of urination and pain with ejaculation. Tim applied pressure and temporarily deactivated it...and I had a *dramatic* reduction in symptoms...I felt almost normal the whole next day (sadly my pain and frequency is coming back now as the trigger point is likely tightening up again). However, Tim gave me more instruction on how to use the Wise-Anderson Protocol wand (which I had never been able to successfully use on myself) and now I can finally hit this trigger point myself. This is huge for me. I want so badly to use the wand on myself every day but I know that is a HUGE no-no because I'll just flare myself up again. I gotta do it only every other day or every three days. Like Tim told me, "If you go to the dentist and he says your teeth are rotting because you didn't brush your teeth, you don't go home and start brushing your teeth 7 times a day...that's only going to hurt you more. You just brush your teeth twice a day regularly and you'll get healthier teeth over time...its' the same way with internal massage. Don't go slamming yourself with the wand in there every day...you gotta give yourself 48 hours to recover...that's a part of the body that's not designed to be touched internally."

So, the good news is that if I continue with the upward trend of symptom reduction, I'm only taking one more week off of work and then I'll go back at the end of the month. My chronic prostatitis / chronic pelvic pain syndrome still gives me good days and bad days (hopefully more good than bad.) Sometimes I feel like I have "good hours" and "bad hours"....the crazy thing about this insane condition is that the symptoms wax and wane with such startling frequency that I gave up trying to figure out what I did to make my symptoms better or worse. Was it something I ate? Was it the way I was sitting? Was it something I was thinking about? Who the hell knows? Trying to figure that out was a futile and frustrating experience that most of the time lead to catastrophic thinking.

CMT I wish you the best of luck with the protocol. I hope you and everyone else hangs in there and sticks with it. DO THE PARADOXICAL RELAXATION TAPES as much a possible. I cannot stress this enough. The key to recovery is definitely in there.

-Yoink

[CMT23]

Yoink, sorry to hear about the long flair. But it sounds like there is some real hope with the large trigger point that Tim found and the relaxation. I'm coming up on 3 months of the protocol. Here's what I do:

1. Stretching 30-45 mins twice daily
2. David Wise relaxation tapes 30min twice daily (I become fidgety after this point - not sure if I am short changing myself by failing to go to 45 min or an hour?)
3. Internal PT with the Wand 3 x weekly (hot bath thereafter - Tim tells some people to do before the PT and some after)
4. Weightlifting and cardio 3 - 4 x weekly. I almost always feel better when involved in regular exercise.
5. Martial arts - 3 x week. Enjoy the focus that it requires and the relaxation that they emphasize even as you are punching and kicking.

I'm not taking any medications, although I do take Valium/Clonazepam/Xanax if things are bad and I can't sleep. (So far maybe a couple times a month).

There have definitely been many times over the past three months where I stopped and said to myself 'wow, I feel pretty good' - basically where the sensation of needing to urinate is greatly reduced. If I compare these last three months to the three months leading up to the clinic, I'm definitely feeling better overall. But overall is the keyword. There are still many times when I am in intense discomfort.

It seems that if I do everything just right to take care of myself - and key to that is sleeping at least 8 hours a night, which I can do if I sleep at the same time every night, that my symptoms generally will stay in the 3-4 range. If however, I sleep late or get up very early, it's almost automatic that I will feel worse the entire next day. Alcohol continues to be extremely troublesome. Sometimes I am feeling pretty good and want to get out of the house. I have 3 or 4 drinks and immediately need to urinate at least 2 x an hour. The next day always brings a dramatic increase in the severity of symptoms and completely knocks me out as far as my energy goes.

The entire situation is difficult socially. I look fine - and probably healthier than the average person. I get invited out all the time and almost always decline. I'm sure that people think I am just anti-social, but after 15 years, this is the most important thing to me. I know that it won't go away by hoping and waiting. And spending an evening out sitting and drinking and skipping the protocol is just not worth it to me at this point. So it is isolating, but I tell myself that it is just temporary.

One of the biggest indicators for me that tells me that I am on the right track is the indicator on the wand. Three months ago, when placed high up on the anterior Levator Ani muscle, even at 1, it caused extreme discomfort and EXACTLY replicated by symptoms. Slowly, over three months I have watched the amount of pressure needed to replicate my symptoms in the same way go up. On the left side it takes 10 to 16 and on the right side it takes 16 - 24 to get the same feeling that used to come with a pressure of just 1.

So I believe I am on the right track. I can still be difficult when there are flares. And then one part of me says 'you've been doing this every day for 3 months, you should be cured by now!' But of course 1-2 years seems to be the more realistic length of time. Anyway I am happy that I have proven that I can do this daily and I have seen enough signs of hope that I will continue.