No pain - just constant sensation of needing to urinate

[CMT23]

George, thanks for this. How much relief did Uroxatral give you? How long did you have to take it at what dosage before you started to feel improvement?

I still have the remaining Uroxatral in my house and I am kind of thinking of trying that maybe after I get back from Santa Rosa. But I would really like to do the protocol and feel things getting better without any medication so that I know 100% that I am on the right track.

I am also a little worried about the extreme side effects that I experienced from just one pill, but I was excited to try a new med and took it at 10am. Bad idea. Maybe if I take it before sleep, by the time I wake up I won't feel dizzy and fatigued.

At any rate, there seem to be enough indicators here that this is something to do with pelvic muscles. Can't remember if I mentioned in this thread or not, but after 2 months of stretching and relaxation, a strange thing started happening. Now every time I stretch the left hamstring and groin, the muscles around the penis and the penis itself quiver uncontrollably. The exact same thing now often happens during relaxation. Webslave offered the technical term, which I can't recall, but to me this is good news as it shows a direct link. (I don't think a quivering penis is the usual result of stretching one's hamstrings LOL). Also, I have noticed that when I lie on the floor face down and then push my upper body up with pelvis still on ground (back and ab stretch) , the symptoms are exacerbated. So again, this tells me there is a connection between the muscles in this area and my symptoms.

I will post with an update after I do the clinic.

Burner, I thought with both Baclofen and Lyrica you are supposed to take every day so that they build up in your system. Did the doctor tell you to take only sometimes? Have you tried Uroxatral or other Alpha blockers? Anyway, all of these medications are on my list to try, but I would love to start to feel a lot better without them.

For me, during the hot bath itself is not when I feel relief. It's when I get out and lie down still that symptoms reduce dramatically. I don't know what this means exactly, but it is something that I have noticed.

Yes, I am lucky with my work. If you are persistent I am sure you can find something that allows you to take care of yourself. For me I try to look at the big picture all the time now. So if I have to spend a year going home and stretching and taking baths and doing relaxation and all the other stuff instead of going out to dinner with friends and things like that, well if you look at the 50 years I probably have left in my life, that's a short period and a small price to pay.

Do you do the self internal PT with the wand?

[gl0342]

Relief from Uroxatral came after 1-2 days. It took away most of the penis irritation/pain and restored flow to 60-80% of what it was previously. But in periods of stress, this can stop having an effect, it happened 2-3 times during the last 6 months, and I was back to square one for a week or two each time. Then I did some relaxation, eased a little bit on sitting and effort, and it was OK again. But I am eager to get rid so if you did not start yet, best is to wait a couple of weeks and see how things goes after the clinic. For others it has no (positive) effect at all.

By the way I remember that I took it once in the morning and felt a strong vertigo for 2-3 hours.

Definitely my penis pain is related to other muscles. I am working on abdominal TPs, and I can easily reproduce/increase the irritation/contraction symptoms by pressing on specific points (which Tim found last week).

Good luck.

George

[yoink15]

CMT23,

WOW! I can't believe it. I'm sitting here in Los Angeles reading your posts and I feel like I'm reading MY OWN STORY. Your symptoms, stories, and methods of relief are almost EXACTLY the same as mine.

SO many thing match between you and me. My symptoms started after a back injury in 2006 (L4-L5 disk bulge, which I've since repaired and I have no back pain. I guess it's a small miracle that that was a 100% success for me..at least THAT pain is gone.)
I do not have a lot of the symptoms that other chronic prostatitis / chronic pelvic pain syndrome suffers have..like pain in the rectum, pain while sitting, or a "golf ball" feeling back there. I have none of that.
My primary complaints are pain in the tip of the penis, and an almost constant feeling like I need to pee. It's driving me crazy! I also get an area of pain right about 2-3 inches directly below my belly button...right about where I believe my bladder or prostate are. It hurts there a lot!
I have very, very tight hamstrings and leg muscles (I have never been able to touch my toes, even when I was a kid). I believe this a big contributor to a tight pelvis. I can't stretch my legs out or back without tight pain right where they connect to my hips.
The pain turns into a burning sensation after ejaculation, and continues through the urethra towards the tip of my penis. Usually lasts all night and into the next day! Aaaaaaaaah! I hate it!
I visited Dr. Wise's clinic in 2009, and I too didn't continue with the protocol because I guess I thought it would just go away on it's own, and it seemed like such an involved process. Now I'm determined to do something! I can't live like this forever!
Not a single medication, herbal, or supplement has helped my urinary problems....but I admit you've tried even more than me.
This has GOT to be neuro-muscular.
At the clinic, Tim found a few trigger points on my lower abdomen, but more importantly he found trigger points inside my pelvis way "high up" on the levator ani muscle, right next to the prostate. Those were pretty much my only internal trigger points. And they were right next to the prostate. In particular, there is a HUGE, painful one on the right side of the prostate, and a smaller, less painful one on the left. But nothing anywhere else on the inside. When he put his finger in there right on the trigger point, I felt the pain, AND I felt it relax after about 10 seconds. It was so weird. When he first pressed on the right side trigger point, I yelled out to him, "OWWW, Tim! Jesus that hurts RIGHT THERE!" And he said, "yup, it's right there, to the right of the prostate." And then after about 10 seconds the pain faded away, and I said, "OH man thanks for lightening up on the pressure." And Tim said, "hey I haven't lightened up anything. I've been giving you constant pressure this whole time." And it was like an amazing moment where I realized that Tim was literally relaxing that point right then and there and the pain was going away. Unfortunately, as trigger points don't go away in one treatment apparently (or even 10 or 100 sometimes, it seems) and since leaving the clinic, I have had a lot of trouble finding those same spots again...which leads me to my next similarity with your story...

When I do my own internal massage work, there is a RAZOR thin margin of error between hitting the right muscle and striking the prostate.....and if I do the latter....omg....I am in the most WTF ZOMG KILL ME NOW PAIN ever for the next 2-3 days. I made that mistake again about 3 weeks ago. I knocked my massage wand right into my prostate and 2 hours later while I was laying in bed with my wife trying to sleep, I was literally laying there, drenched in sweat, secretly sending a prayer to whatever deity would listen to just kill me right then and there. Each second that passed felt like an hour...the pain in my pelvis (right behind, and in, my penis) was so intense I wanted someone to tranquillize me into unconsciousness. Also another similarity...when I DID press on my prostate with the wand, it recreated a very intense version of the painful urinary symptom that I experience all the time. I feel that there is a very strong connection between my prostate and this urinary symptom. I read earlier in this thread that someone suggested there could be a trigger point ON the prostate. Is that even possible? The thought of that makes my head want to explode. I can't imagine the pain that would be involved in trying to relax THAT one.

I do have a very stressful job and I believe that constant and continuous use of the relaxation tapes that Dr. Wise gave me is one big part of this recovery. On Aug 6th I'm seeing a PT named Bonny here in Los Angeles that specializes in internal trigger point therapy. I've seen her a few times before in 2008 and she is one of the few PT's in LA that I've found that's willing to put her finger back there and do the work of finding internal trigger points. I'm just frightened that I'm in for a hellish, nightmarish experience when she does it.
-Yoink

[webslave]

Yoink, that's a very interesting post that explains what happens with some men after the Wise Clinic, and why there is not always an easy path to success.

there could be a trigger point ON the prostate. Is that even possible?

No, but the insertions of the levator ani are behind the prostate, so pressing on the prostate also presses on them.

[CMT23]

Hi yoink. I'm on my phone now so I'll post more tomorrow when I have my laptop.

What medications have you tried?

Are the back doctors confident these symptoms are not related to that injury?

I had the same horrible flares when I tried some of the internal stuff with a prostate massager. Maybe I was pushing too hard or in the wrong place, but I'm talking 72 hours of pure hell. Same symptoms just times 10. So that's what I'm nervous about going forward. I can manage everything else.But if I have to experience flare after flare, I don't know...

I am very curious to know what happens to a normal man when you press on all these muscles inside. If the answer is nothing, then we know that we are on the right track.

I too feel better when my bowels are full. And immediately after a bowel movement there is huge relief for a minute or two especially if I lie down. Then I can feel all the muscles down there contracting. I try to relax them, but they pull tight no matter what and symptoms return.

The way that things have happened for me is that i have slowly ruled out everything else and paid more attention to my symptoms and realized that the Wise approach seems to fit perfectly with what I am experiencing. I just can't wait to post in the success stories section 6 months or a year from now.

Will post more soon. Hang in there!

I've ru

[yoink15]

Hey CMT23,

I know it sounds crazy, but just reading all your posts again made my symptoms start to feel better. Just knowing there are other people out there with symptoms so similar to mine really calmed me down, made me feel less alone. And that in turn started making my pelvis hurt less. This is just another clear clue that a portion of this whole disorder for me is mental/pyschological. My symptoms seem to fade when I'm in a good mood, and become uncontrollably bad when I obsess about disastrous thoughts of the future.

What medications have you tried?

Detrol (no effect), Vesicare (no effect), any accredited quercetin product (very little effect), Ural-Q (very little effect), Bromaline supplements (no effect), a couple of weird chinese herbals that I can't even remember (no effect), Advil (very little pain relief), Soma (very little effect).
The only thing that I ever took that *seemed* to provide even moderate relief was Pollen Aid (sometimes called Graminex). I saw that there was a clinical trial that showed that Pollen Aid (or similar pollen-based treatments) gave some relief to men with CPPS. And last year for me, it seemed to be working. I sorta stopped taking it because I ran out and forgot to order more, and then earlier this month when I flared up so severly (still flared up now!) I got some more Pollen Aid but for some reason it's doing NOTHING to help me now. I get zero help from it at all. It's very confusing!

Are the back doctors confident these symptoms are not related to that injury?

Well my surgeon told me that there's nothing more he can do for me. He basically said, "Hey, I repaired your back, and the MRI says you're in great shape back there. You have no more disk buldge, no more pain, no more numbness and tingling in your leg. In most circles, that's considered a complete success. If this urinary issue is some sort of weird problem stemming from your back, it's not something that shows up on an MRI and I'm 99% sure it's not something that I (or any other surgeon) will be able to fix."
So that route is pretty much done for me. In hindsight, I believe my chronic prostatitis / chronic pelvic pain syndrome was *initially brought on* by my back injury, but my lifestyle and stress lead to all my full blown symptoms. When I had my back injury, I was in so much pain, I had to limp when I walked. And I walked like that for a YEAR. (Ya, stupid, I know. What was I thinking?) Can you imagine how out of whack my pelvis must have gotten from LIMPING around for a year and CLENCHING in pain all that time when I walked? And then, after the surgery itself, the recovery pain continued for a long time, and I still held my pelvis and back tightly, clenching from the pain all the time.

I had the same horrible flares when I tried some of the internal stuff with a prostate massager. Maybe I was pushing too hard or in the wrong place, but I'm talking 72 hours of pure hell. Same symptoms just times 10. So that's what I'm nervous about going forward. I can manage everything else.But if I have to experience flare after flare, I don't know...

Well I have some good news on that front. I am going to see an expert internal pelvic floor trigger point therapist on Wednesday here in LA. Her name is Bonny Cardenas and she knows how to press on internal trigger points. I've been to her before. She's not as good as Tim Sawyer at the Wise clinic but she's pretty much the best LA has to offer. I'm going to discuss my (and basically, your) story with her about flare ups after internal trigger point massage, and address massaging the prostate, and any trigger points that might be behind the prostate. Hopefully I can shed some light on this for both of us.

I too feel better when my bowels are full. And immediately after a bowel movement there is huge relief for a minute or two especially if I lie down. Then I can feel all the muscles down there contracting. I try to relax them, but they pull tight no matter what and symptoms return.

Interesting. I don't experience the relief immediately *after* a bowel movement. Things get worse for me after a bowel movement. The relief for me comes BEFORE the movement. And I also can't feel my muscles contracting. I never have been able to get a feeling of "tension" down there that other men describe. My pain has always been more a burny / achey feeling...not exactly a "tension" feeling per se. But maybe it's all semantics.

When I woke up this morning I was in such terrible pain and urinary frequency. I was starting to get an anxiety attack over it. So I took a hot bath (which I never do in the morning) and did skin rolling and some external self massage. I felt better. Then I did some stretching and tried to do some paradoxical relaxation with a tape from Dr. Wise. I had trouble calming down from the anxiety during the relaxation session so it wasn't a great success. However I did feel that my symptoms dimished a little. I'm going to try the whole plan again when I get home tonight. What else can I do, ya know?

[yoink15]

Also, two things I think we should try. L-Theanine apparently has a great calming effect on the body...it's an herbal from what I've been reading but people seem to talk about it like it works like a heavy-weight anti-depressant.
Also, can anyone shed some light on Elavil? Is that something you think might help?

Webslave, I know you're the jedi in these matters. What are your experiences with L-Theanine and Elavil (or any other drugs / supplements you can think of.)

[webslave]

L-Theanine? Carld swears by it, but I find that I'm happy popping a benzo every now and then (1 or 2 per month), to keep my naturally anxious disposition in check (not for pain purposes). I genuinely have no pelvic pain anymore, for many years now in fact.

I find benzos are a very, very useful medication if not abused.

L-Theanine had no effect on me.

[CMT23]

Hi Yoink,

Have you tried Alpha Blockers? Many people seem to get good results with these after initial side effects... Also, some people get good results with Lyrica. I haven't tried either, but they are on the list. I also may try Baclofen and Flexeril depending on how things go with the clinic next month.

Valium and hot bath and then lie down always gives me some relief. 5mg to 10mg usually. But in cases of extreme flares, I have taken 20mg or 30mg just to make it through the night. After a couple days, as long as I can get enough sleep, my body resets itself or something and the sensation returns to its normal level of discomfort. If I really need to knock myself out, then I take Xanax.

Elavil I have tried. Works for some people, but for me I honestly felt suicidal after 3 days. So that was enough of that. Neurontin works for some. Did nothing for me.

Do you do daily stretching and relaxation? I stretch at least 45 minutes a day now. Hamstrings, groin (pigeon stretch from yoga) hips (rolling on softball) and more. I do 20 mins. relax 2x day (3 or 4 months already). I guess that will need to go up to 45mins soon.

I definitely feel a connection with anxiousness and the severity of symptoms. When I am well rested, working out (heavy weights and cardio 5 x week) and generally am happy about things, then usually (but not always) the severity of my symptoms is not extreme. When I am worn down, stressed, and worried, usually the symptoms feel worse. There is a definite mental connection, but also a physical one.

I would be very interested to know what your PT says about avoiding flares. According to A HEADACHE IN THE PELVIS book, it seems like they can't be avoided but maybe there is a way to reduce the severity. I would also like to know what happens if a normal man undergoes internal PT. Do they walk away feeling like they need to urinate as we do? If not, then we know that these muscles are a major part of the problem.

L-Theanine, I have been taking for 4 months or so. I do feel better overall the last our months, but I have been doing so much, that it's anyone's guess as to what is having an effect. At any rate, I don't at all feel 'cured'. Just overall, I have more time of mild discomfort rather than that unbearable intense feeling that we both know all too well.

Below I have pasted a list of everything that I am taking. A lot of this was based on blood tests that showed deficiencies in some micro nutrients. But L-Theanine and HTP-5 is my own choice as it seems to have helped some people.

I am also injecting testosterone weekly - not sure of the dose. One doctor here thinks that low testosterone to estrogen ratio (mine was 15 to 1 and is now 18 to 1 - she wants to get it to 30 to 1) can cause blood vessels to contract and in some people may cause these symptoms. I thought it was worth following up on. At any rate, my overall energy is up with the testosterone.

I also inject 1IU of HGH every night as that was found to be low and I believe can effect constriction of blood vessels.

Webslave mentioned that the Levator Ani muscle goes behind the prostate. But I am confused because from Google Body it appears to run parallel. See attached screenshots. Have you ever played with Google Body? It's pretty amazing. You can fly in to any area of the body at any angle. http://bodybrowser.googlelabs.com

Keep me updated. I think there is enough knowledge out there now that one can get over this if they are determined.

LIST OF SUPPLEMENTS I AM TAKING:
Bladder Support - 2 months and stopped
Quercetin - 4 months and stopped
Vitamin E 400IU
B3 500mg
Spirulina 3000mg
Resveratol 100mg
Zinc 150mg
CoQ10 100mg
N-Acetyl Glucosamine 500mg
L-Theanine 400mg
5-HTP 200mg
Chromium 200mcg
Acidophillus 6billion
B-12 5000mcg
Copper 3mg
Folic Acid 800mcg
Vitamin C - 2000mg

[CMT23]

Here's one looking forward from behind the prostate.



Uploaded with ImageShack.us

[webslave]

That's a rough idea, you'll see better here:
http://ucpps.men/1/

Bottom line is that the levators go alongside and a little behind the gland. If you squish the gland backwards, it flattens out onto the levator insertions.

[CMT23]

Thanks for the clarification webslave. How difficult is it to self treat trigger points located high on the Levator Ani? As Yoink said, it seems there is a razor thin margin between pressing on the prostate and pressing on the Levator Ani.

Yesterday I felt pretty good all day. Maybe a 5 or so. I always go to sleep at about 10pm. Last night I went to meet a friend, had one large glass of wine and went to sleep at 11.30. I had to wake up 4 or 5 times during the night to urinate and I woke up at 6am as usual. Since waking up 10 hours ago now, I have had to urgently urinate more than once every hour. (I am drinking a lot of fluids, but still this doesn't seem normal). I feel like I am in a bit of a daze, my symptoms feel much worse - maybe 8 on a scale of 10, and I can feel myself getting anxious.

As I have gotten older this same pattern seems to follow without fail if I drink even a little alcohol and if I am not perfectly rested. Tomorrow it will be better and if I take care of myself, within 2 days I should be back to a level 5 or so.

I understand the theory that the mental state coupled with the physical tightness of the muscles over time creates an inhospitable environment for the nerves and organs down there. Webslave, is that how you would explain why a little sleep deprivation and asome alcohol can make me feel much worse for 24-48 hours?

[webslave]

How alcohol affects us:
viewtopic.php?f=13&t=7741

[yoink15]

Gah, I'm in so much pain right now. I know I've kind of been AWOL for the past two days or so...and it's because I've been way up and then way down with my symptoms in just 48 hours! SO FRUSTRATING!

I went to go see Bonnie Cardenas here in LA and we had a good session. It's been a while since I'd see her so she took a complete history and symptom rundown from me all over again. She also had one of her assistant PT's do a bunch of dexterity and limberness tests on me..they all seemed pretty average she said. Then she had a PT do a bunch of abdomen and leg massage on me. I found that my adductor muscles were super tight as well as my hip flexors. We didn't do any internal massage though, we're saving that for a weekend appointment so I don't have to go into work afterwards (I work the nightshift). We talked a lot about the internal massage, and also my apprehensiveness about it. She said that if we go very slowly, and very gently, she thinks we can avoid flares.

So that night after work I went home and proceeded with the Wise Protocol. Took a hot bath and did skin rolling. I had read on the forums that skin rolling was supposed to help with urinary issues, particularly frequency, so I skin rolled the HELL out of my lower abdomen. I found that there were two spots, just above and to the left and right of my penis (I'm talking VERY close, like .5 inch away) that seemed to hurt a lot when I rolled them. I pinched and squeezed them, and afterwards I felt like my urinary symptoms had improved. I'm wondering if I found some sort of new trigger points that I hadn't felt before? Or maybe was I tugging on something that was in turn tugging on something deeper in my pelvis, perhaps in front of my prostate? In any event, I felt better afterwards, by a surprising amount. Afterwards I continued with the protocol, with external trigger point massage, stretching, and relaxation. Felt good and then went to sleep.

Woke up today feeling okay but a little anxious. After taking a bath, doing more skin rolling, more external work, stretching and massage and a good relaxation session, I felt pretty good so I tried a little experiment. I had an ejaculation but I tried to keep it as calm and as relaxed as possible. The good news...I had no pain with the ejaculation..but about 30 minutes afterwards I was burning all inside my urethra and back behind my penis. NOT GOOD.

I had to go to work so I just took a couple of Advil (didn't help) and rolled into work. The burning got a little better as the night went on, and I thought it was pretty bearable. Then I had dinner. What happened afterwords now has me thinking there must be a diet component to this, too. BOOM I was in huge burning, pain again. I had non-spicy turkey chili for dinner, a slice of banana bread, a small cup of yogurt, and some strawberries and an orange. Also a big bottle of Smart Water. Well about 1 hour after dinner I was in so much burning urethra pain I've been about 5 times this hour alone. Could the orange be the culprit? I've been avoiding them for the last couple of days (I usually like them) and now for some reason I'm really noticing this pain and wondering if that could be it.

Isn't this part of IC? Now I'm freaking myself out.

[yoink15]

Also, I'm going to try to order some prelief tonight and also ask my PCP about getting me on Elavil and Flexeril.
How do I go about doing that? Any advice on how to ask for that. I guess I could just say "Hey doc I hear this stuff helps, can you write me a prescription?"