No pain - just constant sensation of needing to urinate

[fourleaf]

CMT23,

Have you ever thought about IC as your diagnosis? I only ask as I have very similar symptoms as you and after reading all I could about IC I feel that my condition is closer to that than true prostatitis. I think there is significant overlap in symptoms for guys and probably similar causes so I'm not real sure the distinction is all that necessary. But at least in my case the symptoms are way more urinary than true pain. Also diet seems to be a strong trigger for most IC people (esp alcohol) and I have noticed that in my case for sure. I also share the same sleep issues as you as well as the curious association with BM's and a reduction in symptoms. It's encouraging to hear you are making progress and I hope we both can solve this riddle!
Take care.

[yoink15]

Hey CMT23,
I'm so glad to hear that you're sticking with the Wise-Anderson Protocol so successfully. You sorta of have a head start on me there. While I've been suffering from these major symptoms since July, I really only believe I truly started on the Wise-Anderson Protocol path since Oct 19 when I saw Tim Sawyer for that one-hour appointment. That's when I began to religiously do the internal work with the Wise-Anderson Protocol wand correctly, and that's when my symptoms started to change for the better. Before Oct 19th, I really wasn't doing any internal work at all, and was only doing stretching and relaxation, which was getting me nowhere fast. I guess for me, internal work is going to be the largest (but not only) component to my recovery.

As for medications, I'm only taking a very very low dose of the anti-anxiety med Buspar. As a matter of fact, the dose I'm taking is BELOW the minimum recommended dose. So I'm really not sure it's doing anything but I do feel better when I'm on it..I don't worry and tense up so much..so I'm going to stick with it.

You said:

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.

Wow I could not have said that better myself. That's almost word-for-word how I'd describe my exact same situation. There are times when I'm in quite a bit of pain and I get really depressed and I tell my wife I feel miserable and she says, "Stop. Think about it. Compare this to the way you were two months ago? Now how do you feel?" And I have to admit that compared to the pain that I'm in now, overall it's still better than the absolutely *nightmarish* state I was in two to three months ago. But overall, I'm on the right path I believe. I'm back at work, and can sleep normally (for the most part) and I can eat normally (for the most part). Interestingly, my urinary frequency seems to be reduced across the board, but I still have pain (which I actually didn't have in years past). I think this is clearly a sign that I'm on the right path. Pain after PT is not necessarily a bad thing, as these muscles have been tense for so long that they're complaining like banshees after being forcefully opened up.

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.

Again, wow...that's exactly what's going on with me, too. It seems like our recoveries are mirroring each other very, very closely.
When I first started using the Wise-Anderson Protocol wand to press on the trigger point on the anterior levator ani, almost directly on the right side of my prostate, it felt like I was pressing a hot knife into my prostate itself. I got this crazy burning sensation in my bladder and in my penis. It was AWFUL! But...deep inside my brain I knew the pain was a good thing because it finally meant for the first time in my life I was hitting that tough piece of muscle that had been giving me grief for all these years. I could never have found it or pressed on it correctly without proper instruction from Tim Sawyer. Now, after more than a month of internal PT (once every two days), I can press on that trigger point without ZOMGWTF amounts of pain...and the true test that I'm doing the right thing is that my overall pain is reduced! However that big trigger point to the right of my prostate is SUPER stubborn. It's going to take a long LOOONG time to get that thing to relax. I'm also hitting other smaller points on the left side of my prostate, too. I don't know about you, but I have ZERO other trigger points that I can find. None anywhere else on the pelvic floor, and none on the exterior either.

As for your routine, it's similar to mine...

1. Stretching 30-45 mins twice daily

Okay wow that's A LOT of stretching. I find that I don't need to do nearly that much stretching. I do about 5-10 minutes before I do internal work. The cobra stretch helps me the most. I find that my central abdominals clench up the most and the cobra helps to lengthen them out.

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?)

YES! Yes, yes, yes. It's taken me almost three months but I've finally settled into the joys of using the Dr. Wise tapes. I usually try to do an hour in the morning, and then maybe 30-45 minutes at night. (It's hard to measure exactly how much time I'm doing a day because his tapes are all different lengths..have you noticed that? Some are *vastly* longer than others. Some of the early ones are only 30 minutes long..but some of the later ones are more than an hour I think!) I did have trouble figeting at first, but now I can go the whole hour no problem. Actually, my one true obstacle that I have is that if I'm tired at night when I do a tape, I fall asleep. That's why I've found it's better to do it in the morning. It's really true that you should do the tapes when you have the most energy, and for me, that's after I wake up, take a shower and have breakfast. I've also noticed that I simply don't get as much benefit out of the tapes when I do them at night. Of course, the challenge of doing them in the morning is that if I sleep late, or feel lazy or whatever, I run out of time and I have to get to work. This takes discipline!

3. Internal PT with the Wand 3 x weekly (hot bath thereafter - Tim tells some people to do before the PT and some after)

This is exactly what I do. I take a bath afterwards. Internal work is the key to success, I believe!

4. Weightlifting and cardio 3 - 4 x weekly. I almost always feel better when involved in regular exercise.

Here's where we differ a little. I'm doing cardio every day, mainly the elliptical machine, but I'm afraid to do weightlifting. I was doing a LOT of weightlifting before my symptoms got bad, and I'm wondering if that's what contributed to it all. If I had to say, doing the leg press, deadlifts and squats were the worst culprits. However, Tim Sawyer DID say exercise was good for this condition. He said, "Try to do cardio every day. I guarantee you that you will feel better for it. It helps keep the blood flowing." I'm thinking that since our conditions are so similar, and you're doing so well with weightlifting, maybe I should try again. To be honest, I was doing weights almost a full 18 months before my symptoms got bad..so maybe it will be okay for me after all.

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 don't do any martial arts at all...but there is a world-class muy thai instructor that teaches at my gym. Maybe I should investigate.

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).

I have taken Klonopin twice in the last 45 days, and it's been a lifesaver. It has stopped a flare dead in it's tracks. My doc gave me a prescription for five tablets of Klonopin at .5mg each. When I take a dose, I take a QUARTER of a tablet and that's all I need for the night. That stuff is STRONG lemme tell ya. So I'm not too worried about addiction or whatnot since I'm taking it about once a month for flares, and then only a quarter of a tablet.

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.

I hear ya man. Flares. Gah. The bane of my existance. Every time I get one I get a mini-panic attack. "Oh my god," I think. "I'm sliding back into the nightmare of non-stop pain that I had two months ago!" But inevitably, the flare calms down in 24 or 36 hours and I'm okay again. Come to think of it, I'm probably extending the length of the flare by having these catastrophic thoughts of descending back into pain. Thank god for my wife. She reminds me that flares are only temporary and that things ARE getting better. She's my biggest cheerleader and I've taken to calling her the "Captain of Team Pelvis". She's the captain and I'm just a soldier. I do all the work and she keeps me level headed and on course. I don't know how I'd get through this without her.

All in all, I think you should be proud of how far you've come. I know I'm proud of my ability to stick with this despite the pain and depressing thoughts. I miss drinking alcohol. I miss drinking coffee. Life is sometimes so boring and filled with pain. But once I overcome this and am pain free, I'm going to be so proud to show off my recovery like it's a battle scar or a medal. I can honestly say that there has been no challenge in my life greater than this. It's become to define my identity, for better or for worse. But finding this board and other souls like yourself, webslave and others has really been a good experience.

And I also agree, I've been doing the internal work for about a month and a half and I say to myself, "Come on! Why am I not 100% better already?!?" and I tell myself it's going to be months and months before I'm pain free. But at the same time, I can't put a timeline on it...because everybody's bodies heal at different rates. So I guess I'll have to settle for "months and months" in terms of recovery time.

[yoink15]

Have you ever thought about IC as your diagnosis?

Hey fourleaf,

I thought I just read somewhere (maybe webslave can help) that researchers now think that IC is caused by the exact same thing that chronic prostatitis / chronic pelvic pain syndrome is caused by. Tight muscles that enflame the nerves and cause the bladder wall to get all screwed up.
For the longest time I thought I had IC, too...since my symptoms sorta behaved like IC. However after I engaged in the Wise-Anderson Protocol and worked my trigger points, my symptoms reliably got better, including a great reduction in urinary frequency. I'm 100% convinced there's nothing wrong with my bladder per se. It's just an innocent bystander (as Dr. Wise likes to say) of the designated federal disaster area that is my pelvic floor muscles.

[webslave]

I thought I just read somewhere (maybe webslave can help) that researchers now think that IC is caused by the exact same thing that chronic prostatitis / chronic pelvic pain syndrome is caused by. Tight muscles that inflame the nerves and cause the bladder wall to get all screwed up

That's a political question. Yes, some researchers (quite a lot actually) do think that, but others, who have long histories of statements and studies averring that IC is entirely unique and nothing to do with male chronic pelvic pain syndrome, are adamant the two are not related. The latter group has research funding dependent on IC being unique, etc, so as I said, there's more than science at stake here, also money and reputations.

My opinion, after reading all the arguments, is that the two are essentially the same condition.

[fourleaf]

Where can one get one of these wands? Are they available for any of us or do you have to be part of the Wise- Anderson clinic? TIA

Fourleaf

[yoink15]

Currently, the only way I know of to get a Wise-Anderson Protocol wand is to attend the Wise-Anderson Protocol clinic in Santa Rosa, CA.
Besides, it's really important to be personally instructed on how to use the Wise-Anderson Protocol wand correctly. I wouldn't trust anyone else but Tim Sawyer to instruct anyone on how to use it.
Incorrect usage of the Wise-Anderson Protocol wand on yourself without training can result in very painful things happening to your pelvic floor, as a flare up (probably a huge one) is virtually guaranteed.

[CMT23]

Hi fourleaf. I'm certain that I don't have IC. Apart from the fact that I had two unremarkable cystoscopies when this all began, my symptoms don't behave like IC. Spicy and acidic foods have no effect whatsoever. Alcohol always has an effect, but keep in mind that normally a few glasses of wine while I sit still can almost alleviate my symptoms! Then, when I urinate and get up and walk around the sensation comes on more intensely and the next day is almost always worse. With IC, your bladder lining is damaged and any alcohol would send me through the roof. That's not how it happens. I think it's exactly what David Wise describes in his book - a complex interplay between muscles and nerves and the nervous system. The whole system is out of whack. Also, crucially while I have frequency and urgency, I often sleep 9 hours without getting up. And the sensation of intense discomfort comes from the tip of the penis, which of course can be replicated exactly by pressing on the muscles adjacent to the prostate. At this stage, I have ruled out everything there is to rule out and the Wise approach makes perfect sense. And it makes sense not only intellectually, but I can actually see it in action. Hot bath lie down - symptoms subside. Press on the muscles in question and duplicate my symptoms. Anxious and stressed - symptoms increase.

I believe the wand is available in some countries in Europe over the counter. However, you will really want to get instructions on use so you can make sure you are hitting the right spot. If you happen to be in Europe, pick one up and then come back and see Tim. If not, then the clinic in Santa Rosa is worth attending if you feel confident that you have ruled everything else out or if your instincts tell you that it is right for you.

yoink, great to hear of your progress. Our situations really mirror each other. I usually stop the tapes at 30 minutes regardless of the tape that I am on. I don't know if I need to force myself to push on or not, but I feel proud of myself that I can do this twice a day. I remember a few months ago thinking that it was the end of the world that I would have to do all of this every day. Now it's just something I do.

It is still tough socially. I plan my days around making sure that I get my routine done even when it means going home early and turning down all kinds of invitations. People must think I am a bit odd, but after 15 or 16 years of this, I'm willing to do what it takes.

As far as the weights, I don't do abs or legs on Tim's advice. And I do reps of 18 down to 12, so not really heavy. The weights, cardio, martial arts is all about moving and working off stress. I'm positive that I feel better when I am in this routine. The martial arts is great because a lot of us have a tendency to be over thinkers and these arts are all about dropping thought and just reacting. It only works when you are relaxed and you turn off all the analyzing and thinking. Anyway, sometimes I get in a zone and it's great.

The challenge overall is just to keep doing the protocol regardless of what you feel like today and without knowing when you will actually really turn that corner and become symptom free or close to it. If someone could tell me today that I will be fine in 8 months 2 weeks, and 3 days, it would make the whole thing easier. But no one can tell you that. So there is an element of faith. But it's not all based on hope - the fact that a symptom free person can insert the wand and press and feel nothing and we can't is a very clear indication that these muscles are dysfunctioning. And the fact that three months into the protocol, I can press 20 times as hard as I could at the beginning obviously shows that progress is being made.

I will keep everyone updated. Keep at it!

[fobo]

Since 1 year ago I almost always wake up 1 time during the night to go to the bathroom. Sometimes none and rarely 2 times. I try to fully empty the bladder before going to sleep (by going to the bathroom more then one time) and I feel some urge to go to the bathroom immediately after I wake up in the morning.

That being said, I began to read a book called "The better bladder book". I read that getting up 4 times at night is a hallmark for people with IC. But this might be a symptom for a full IC case, other like mine for example might be moderate, who knows... yet I too can not feel that strong relation with spicy and acidic foods in my case.

[fourleaf]

I also do not have much issue with spicy or acidic food but I try to avoid it due to my IBS. Normal cystoscopies do NOT rule out IC... unfortunately. In fact there really is NO accepted test for affirmative IC diagnosis. From my understanding it's all clinical symptoms. I totally agree that there is a complicated interplay between muscles, nerves and organs. I think the term "IC" is an umbrella term that basically covers all who have UTI type symptoms without any positive cultures. That's a wide range of symptoms and wide range of severities. I don't know if I have IC or "prostatitis" but I could care less which one I have if I can just control the symptoms!! If you look at the treatments there is a lot of overlap anyway. Keep us posted and keep up the good work... it sounds like you are going the right way.

[Burner2k]

CMT23,
Good to read that you are making progress with Wise-Anderson Protocol protocol. I was doing pretty good since Sept...had urgency issues but very controllable. The only thing which has developed is a trigger point right at the navel. Wiggling the damn thing recreates the urgency sensation at the tip of the penis. I have done stretching, Theracane work outs (about twice a week) and the damn thing just keeps coming back. I am almost off meds completely. I take Valerian Root after ejaculation and I am thinking about L-Theanine after ejaculation to reduce spasm (not sure if it performs that function!).

Any suggestion folks on how to reduce the trigger point on navel. It certainly seems very strange. Good luck to all suffers :)

Regards,
- Burner

[CMT23]

Quick update. Five months and 10 days since starting protocol. I do the wand three times a week. Stretching twice daily for 30 mins. each time. Relaxation twice daily 30 mins each time.

There have been a number of "windows" of time where I have felt quite good, almost no discomfort at all. What a great feeling. However the windows last only a few hours and come once or twice a week. Five days ago I had a period of 7.30am to 3.30pm where I felt almost completely normal and only urinated once. I remember thinking what a great feeling it was! I haven't felt symptom free for that long for years and years. However, that afternoon the usual level of symptoms returned and have been around for much of this week.

When it is feeling much better, it is easy to think that this is working. When it returns to the usual discomfort, it is more difficult to remain positive. However, I continue the protocol in earnest.

There is definitely a change in the pelvic floor muscles that can be measured scientifically. When I started the protocol, a pressure level of 1 on the wand at the muscles adjacent to the prostate was enough to recreate my symptoms exactly and to an extreme level. Now I can go up to level 25 or even 35 before I feel that same sensation. I have also noticed that the left side is worse than the right side. Anyway, the change in pressure gives me hope that the muscles are lengthening. If I look at this as a 2 or 3 year process, I am only about 20% in.

I will keep everyone updated.

[webslave]

Don't forget that a lot of this is just the winding back of allodynia



Your job, through massage, stretching, meditation and relaxation, is to keep those noxious pathways free of electrical "foot traffic" so that the grass can overgrow those unwanted pathways again.

[yoink15]

Hey CMT23,

Good to hear from you. It's great that you've been sticking with the protocol! I too have been doing the protocol religiously since Oct 19th. I'm about to complete my fourth full month of doing it, and it seems like we're doing similar things and making similar progress.

My protocol is the wand three times a week just like you. I'm doing much less stretching...just about 10 minutes, three times a week (basically before the wand sessions). However I'm doing a minimum of one hour of relaxation each day...usually I try to double that to two hours. One in the morning before work, and one in the evening. I've discovered that all of my problems basically reside in a ring around my prostate, and just below it. those are my only painful spots. I have no real external points to speak of, but my abdomen muscles (rectus abdominus?) are usually tight. I can feel them when I do the cobra stretch. I also stretch my psoas. When I do the relaxation tapes now, I can almost 100% reliably make my pelvic symptoms drop to zero *while I'm doing the relaxation*. However within minutes of finishing and getting up, I can feel them begin to return.

Overall, I'm doing better and better. If you recall, I had a *disastrous* couple of months with my CPPS. It was so bad I had to take disability leave from work and I couldn't sleep or eat...literally. I lost about 15 pounds and for a few weeks, was only sleeping about 2 hours a night. It was a nightmare! However doing the Wise-Anderson Protocol appears to have completely pulled me out of that zone...I've been back to work since November and I'm sleeping normally again. (However the memories of how bad it was still haunt me).

Like you, I've had hours here and there where I've felt pretty good. Not "perfect" but pretty good. Ultimately I'm not settling for anything less than perfect. I keep telling myself that I will keep at this, stretching and massaging my muscles and relaxing my central nervous system until I can say that I'm back to feeling like "normal" people. I want this chronic prostatitis / chronic pelvic pain syndrome done and out of my life forever. If that means I have to do the Wise-Anderson Protocol for the rest of my life than so be it.

Like you, I always feel positive when I feel better, but I let despair creep into my life when my symptoms return. Actually, for the first time ever last night when I was doing my internal work...I noticed something. One of my usual big "trouble" spots in there was completely pain free. I was surprised! I took the wand pressure rating up past 27 in that area and still felt no pain. It was VERY weird! It must have finally relaxed. However overall I still have symptoms so I guess there must be other trouble spots in other places. I am continuing to work all over in there!

Which leads me to some questions that maybe webslave can answer. First, can you explain a little bit more about what allodynia is and how it relates to us? I understand your graph and it's very interesting but I want to know more. Because I feel that a majority of my pain and urinary frequency is allodynia-related, as I understand it. The internal areas of my pelvis are getting easier and easier to work with less and less pain when I put pressure on them with the wand. However I still have chronic prostatitis / chronic pelvic pain syndrome symptoms like urinary frequency and an "achey" feeling in the prostate area. Is this allodynia? Does it ever go away completely? Can I do anything to help speed it up? I'm guessing the paradoxical relaxation really helps with this aspect, no? Is it possible that my pelvis is really getting relaxed but my nerve endings haven't really "caught up" yet?

Also webslave, do you believe that a person can be 100% pain free from this forever? I know you've said that you are 100% pain free but do you consider yourself the exception to the rule or do you believe this can be achieved by everyone? Also, in your experience, do you believe that maintaining a 100% pain free life requires the Wise-Anderson Protocol being done just as it is now for us (three times a week, several hours of relaxation a day) or as we reach a 100% pain free state we can do less and less of the Wise-Anderson Protocol?

Thanks guys!

[webslave]

However overall I still have symptoms so I guess there must be other trouble spots in other places

Please re-read the post above yours....

Is this allodynia?

Yes, most likely.

Does it ever go away completely?

It did for me, why not for you?

Can I do anything to help speed it up?

That's what the whole forum is about. Reading all the tips here, and implementing them, is the trick.

I'm guessing the paradoxical relaxation really helps with this aspect, no? Is it possible that my pelvis is really getting relaxed but my nerve endings haven't really "caught up" yet?

Yes and yes, exactly.

Also webslave, do you believe that a person can be 100% pain free from this forever? I know you've said that you are 100% pain free but do you consider yourself the exception to the rule or do you believe this can be achieved by everyone?

1) Yes, although it can always come back if you start living the wrong way (and for some people, also eating/drinking the wrong things); 2) I think it can be achieved by everyone. I am not by any means the only one to recover completely.

Also, in your experience, do you believe that maintaining a 100% pain free life requires the Wise-Anderson Protocol being done just as it is now for us (three times a week, several hours of relaxation a day) or as we reach a 100% pain free state we can do less and less of the Wise-Anderson Protocol?

No, it's not forever. But for a period, you should follow the protocol closely. How long that is differs from person to person. And for some people, maintaining parts of the protocol indefinitely is what's required.

[CMT23]

Hi yoink. Good to hear that you are keeping at it and that the massive flare ups have not returned. Certainly if you can alleviate your symptoms in large part or completely during relaxation then you are on the right track!

For me many times (but not at all always) during relaxation - especially right after a hot bath - I feel a huge reduction in symptoms. However this does not always last until the end of the relaxation session and certainly doesn't last once I get up and move around again.

On this point, there is definitely some connection to movement and my symptoms. I may be sitting in the office and symptoms could be at a 3 out of 10. But the moment I stand up to go to the printer or something, it increases to 6 or 7 and stays that way (doesn't immediately reduce to 3 when I sit back down again). I'm guessing this has something to do with the ability of the muscles to relax. The same thing often happens when I get a massage. During the massage when I am halfway between sleep and wakefulness my symptoms are very light or barely uncomfortable. But then when it's over and I get up and go on with my day, usually the sensation returns to its usual level.

I continue to be able to apply more and more pressure with the wand to elicit the same discomfort so I take that as a positive sign that the trigger points are being deactivated/muscles are being lengthened. I also continue to experience fluttering muscles near the center bottom of my butt and in and around the base of the penis. This happens regularly when lying down and even sitting and during stretching and relaxation. It's been going on for nearly a year now and started when I began stretching daily. Many poses still result in my penis shaking back and forth, which my wife finds quite amusing!

There continue to be brief windows of time where I feel quite alright and think 'wow this is really not that uncomfortable'. But the symptoms always return - usually, but not always after urinating.

There is a definite connection to my energy levels and my symptoms. If I am exercising and getting enough sleep and feeling strong, generally my symptoms won't bother me as much. But when I am worn down, the severity of the symptoms increases dramatically. And what it takes to wear me down is not much. If I get 6 hours of sleep instead of 8, I feel it the entire next day.

Anyway, I am still optimistic that I am on the right track and that it is just a matter of time. I have to admit that sometimes when I am feeling bad I do entertain thoughts about what I do next if I do another year or two or three of this and still am not recovered. But that is really not constructive thinking so I try to just do the protocol and be patient. If we say that it took maybe two years to build up to being symptomatic and then 15 years of constant symptoms, that's 17 years. It seems reasonable to think that it could take a couple years to reverse a problem which has been present for 17 years.

I still entertain thoughts in the back of my mind of trying different medications - Xatral, Baclofen, Lyrica and others that I haven't tried, but I am concerned about side effects and I would much prefer to deal with this at the source, which I do believe is the muscle tension and nervous system hyperactivity. (Also, I don't see many posts here saying Í tried x medication and I am cured'). I do take 2.5mg to 10mg of valium sometimes at night when it is really intense. That and a hot bath and a quiet room usually allows me to sleep, which usually results in symptoms being reset to the usual more manageable level of discomfort.

Anyway, the protocol is definitely a challenge in that you don't know when it might finally pay off and you have to make it a priority in your life in order to do it correctly. I have done the latter, but it's still awkward to turn down invitations left and right and spend a lot of time on my own instead. Somehow I don't think that 'I have constant penis and bladder discomfort and I feel like I have to pee all the time' would really make sense to anyone. A bad back is easier to comprehend. Anyway, it is what it is and I will continue for as long as it takes.