No pain - just constant sensation of needing to urinate

[dvdx2]

Dont be too hard on yourself - I doubt that many people can sit in car for 4 or 5 hours without even thinking about needing to urinate at some point.

The best advice I can give is focus on your mental health for a bit; get yourself into a good place of low anxiety/stress/well being, then you will find addressing the physical nature of this condition a little easier.

[yoink15]

Hey CMT,

I feel for you so much, man. I really do. I'm in a very similar situation. I'm approaching 11 months of doing the protocol and I'm pretty disappointed that I don't feel anything close to "normal" yet. Do I feel better than 11 months ago? Ya, I guess so. It's tough to remember but 11 months ago I was absolutely losing my mind over the terrible pain and frequency I was having. Now...I'm mostly just depressed that these symptoms still haven't gone away. They're generally better...but they're still there. They keep me awake at night. They make me afraid to see movies and go on long trips. I see people walking around me all the time and I'm so jealous that they're just living their life pain and fatigue free. I sometime look at them and wish that I could trade lives with them...so that I wouldn't have to deal with this awful condition anymore.

I don't mean to sound like a downer...but I'm exhausted today because my symptoms kept me from getting restful sleep last night (like most nights). On the bright side, the month of August was a much better month for me....comparatively speaking. Why? I really have no concrete idea. I can guess...but all my guesses seem kinda far fetched. My best guess so far is that I've been taking ProstaFlo and Cystoprotek very regularly for the last five weeks or so. My limited improvement this month sorta coincides with the start of these supplements. My next guess is that I've been trying to follow the stretching program in the Amy Stein book as closely as I can. These stretches are very similar to the HITP stretches with a few modifications...I've been doing the HITP stretches for a while so I don't see how a few small modifications could have made that much of a difference. But..I do feel better. Finally, I started working with my old personal trainer to do DEEP stretching of the hamstrings and adductors...which has yield some amazing flexibility results for me. For the first time in my 36 years on this Earth, I can now touch my toes. I went from being almost 7 inches from touching my toes, to being able to touch my fingertips to the ground! Wow! Sadly, I don't see a *remarkable* decrease in symptoms because of this. Or maybe I do? I have no idea. I've been in pain and fatigued for so long it's hard to judge sometimes if I'm better, or the same and just better at dealing with the pain.

So ya buddy, I'm disappointed and depressed too. How much longer will this last? What I really wish is that there were some more success stories from people with a more clear timeline of when they got better. It seems even the stories in A HEADACHE IN THE PELVIS are purposely vague in terms of timelines...and I begrudgingly understand that. If Dr. Wise promised timelines to his patients, there'd be lots and lots of disappointed people because it's nearly impossible to judge when you'll actually get better.

I need to see Tim again. I emailed him again tonight. He's been sorta flaky with me lately in terms of responding to emails.
If you want to Skype or Facetime or something let me know. I Skyped with GARYS and it was good to talk face to face just for moral support and trade tips.

Stay strong. It's not going to be forever.

[elitynski]

Yoink - you've been on my mind and after reading your latest post I felt the need to respond. I know this is such a hard journey and you seem to be working very hard to find solutions that will make you better.

Last weekend I was having a very difficult time - particularly my penis / urethra felt irritated and I could not figure out what was going on. By the time Thursday rolled around, I was in enough discomfort that I went to the E.R.

I didn't necessarily expect any huge help - however, they did prescribe the following:

1) 10mg of Valium to take at night
2) Cipro - which I basically took for the anti-inflammatory effects.
3) Gabapentin - which I already had
4) Pyridium - which is a bladder analgesic.

When I went to bed that night, I slept better than I had in several weeks. I was convinced that maybe the Valium was helping to relax.

However, yesterday morning I took my last dose of Pyridium and tonight I feel more symptomatic. So I'm wondering if the Pyridium was actually doing some good. I know that something helped - or maybe it was the combination of everything. Either way - it told me that I can feel better!!

I'm sorry you are suffering from the depression and aren't getting as much relief as you had hoped for. I hope Tim gets back to you, and like you, I know this won't be forever.

Maybe you could take a trial run of Pyridium and anything else that might calm symptoms. Unfortunately, I know that Pyridium isn't a long term solution.

Hang in there my friend. You've given so much to others and I'm hoping we can encourage you to keep moving forward.

Please let me know how I can help.

[CMT23]

Hi Yoink,

Well as usual I can relate to your situation in many ways. Especially on the rare occasions that I accept an invitation to go out at night, as I (usually) sit there in discomfort and have to go to the bathroom every hour or more if I am drinking, I do feel a little jealous of all the people around me who most likely are just sitting there enjoying the night. But then I try to remind myself that I am lucky in many other ways...

Have you tried Baclofen? 10mg three times a day gave me huge relief, but I was like a zombie so I stopped. It may be worth a try though. I still take Deanxit and Tofranil, but I am not feeling the same relief that I was feeling a couple months ago when I thought that maybe I had finally stumbled on the magic combination.

I will look more at Amy Stein's stretches as I think my current stretching regime isn't doing much. The one way that I can reliably get relief is a hot bath and lying down and 5mg of Valium. I also usually turn off my phone and zone out watching TV or something knowing that I won't be bothered. That's all usually a recipe for relief.

I seem to sleep okay as long as I sleep at the right time (when I begin to get drowsy and before I get a second wind). If the discomfort is really intense, then I take half a Klonopin and sleep through the night.

I can still mimic my symptoms by pressing high and next to the prostate with the wand. But I went from like 1 on the meter a year ago to 40 now - to get the same sensation. So that is proof of an obvious physical change, but I don't feel 40 times better than a year ago so I don't know what it really means. I guess if you can mimic your symptoms with pressure that trigger points are still an issue?

Anyway, I still remember the guy who Skyped with us at the clinic. It took him 2 years to be symptom free. He did report significant relief after a year, but I guess everyone is different. And I guess I have relief in that I haven't been at emergency room level since before the clinic.

Hang in there. I still believe in the protocol and I still believe there are meds that can help to bring relief until success is achieved with the protocol. You're lucky that you can see Tim. It's a $2000 airline ticket and very uncomfortable 16 hour flight for me!

[CMT23]

Another quick update. Decided to try to be normal last night. Went out for a few hours drinking red wine. Initially symptoms quieted, but within a few hours, symptoms were much worse. Have probably urinated 20 times in the last 14 hours, much of which was through the night.

Anyway this is all very predictable and is why I rarely drink now. Tomorrow I will drop to my normal level of discomfort. It is a Dissapointment that a year into the protocol I can't tolerate alcohol any better...

Anyway, no choice but to keep going. Again predictable - after a bowel movement and then immediately lying down still, I experienced a reduction in symptoms of 90% or so. As soon as I got up and moved around the symptoms returned. That has been constant for 16 years... I wonder what is going on...

[fobo]

I feel myself that alcohol can have such an influence on my symptoms. So I categorically refuse to drink it. Same thing for Coffee. Will raise the number of bathrooms trip, which is high per-SE
Sometimes I just don't know what to take, while others might get coffee or alcohol drinks.

So I am taking this opportunity to also ask which drinks to take in these occasions, which are easier on our symptoms?

Most of the times I simply go for 'natural water' in summer and 'chamomile' in winter. Have also used tonic water (like scheps) but it also cost more. Maybe fruits juice but I dont like how they are made

[CMT23]

For me, if I have to drink, then Vodka seems to have a more tolerable effect than anything else. Wine and beer send me to the bathroom every 30 minutes for 2 days and when in between trips to the bathroom, I feel like I have to urgently go. Not fun.

[yoink15]

Vodka is pretty much the only thing I drink now. Specifically Grey Goose martinis. They reliably give me moderate relief from my symptoms, and don't increase the urination too much. Macallan scotch is a second best. Beer and wine seem to be the worst. These two don't make my symptoms any better really...on the contrary, they greatly increase urinary frequency. This seems to more or less fall in line with the chart that webslave's posted before of how alcohol affects us.
I thought I read somewhere that Dr. Wise says that if alcohol makes your symptoms go away temporarily it's a sign that the problem is muscle related...due to the fact that alcohol is a muscle relaxant.

[CMT23]

Vodka is pretty much the only thing I drink now. Specifically Grey Goose martinis. They reliably give me moderate relief from my symptoms, and don't increase the urination too much. Macallan scotch is a second best. Beer and wine seem to be the worst. These two don't make my symptoms any better really...on the contrary, they greatly increase urinary frequency. This seems to more or less fall in line with the chart that webslave's posted before of how alcohol affects us.
I thought I read somewhere that Dr. Wise says that if alcohol makes your symptoms go away temporarily it's a sign that the problem is muscle related...due to the fact that alcohol is a muscle relaxant.

It is good to see that alcohol gives temporary relief for me because it helps me to believe that this is a muscular problem that can be cured by continuing the path that I am on. Interesting that we both seem to do okay with Vodka. Last night I had a single Vodka OJ and I instantly felt relief. I used to take valium and drink a glass of wine and that would give great relief, but now it seems I am more sensitive to wine. (I am not condoning taking pills and drinking, but at this point I'm up for almost anything if it brings relief).

Yoink, do you do the skin rolling? That's one thing I have not been doing for the last 13 months. I guess it can't hurt, so maybe time to start.

Another random question, when you jump up and down do you feel a much increased urge to urinate? Happens every time for me if I am skipping rope for example. If I sit/especially lie still, I seem to be able to get much more relief and this is irritated by movement. Another sign that this is muscle related I guess.

I was getting great relief from Tofranil and Deanxit and feeling very hopeful that I had finally found something that could provide relief while I wait for the protocol to slowly help change my body, but after a couple months, it seems to have worn off. Upped the dosages and didn't get more relief - just felt like a zombie.

Baclofen provided relief, but also put me into zombie mode. Tried to stop and couldn't sleep! Now weaning myself off it.

Xatral didn't work after three months. Not sure if I should try another Alpha Blocker.

Overactive bladder meds don't work.

Elavil didn't work.

Tramadol worked briefly and then stopped working and left me with weeks of horrible withdrawal symptoms.

Codeine doesn't work - makes it worse.

Neurontin didn't work.

I believe in the protocol, but after 16 or 17 years , I am all for pharmaceutical relief if possible. I have to believe that there is something out there that can at least dampen the discomfort. Well I know Valium and Klonopin do the trick, but not exactly a long term solution!

I'll keep you updated. Best of luck.

[Mike Kavo]

I found Tramadol worked well...BUT...it replaced pain with some weird symptoms (and the word HELL to get off it does not do it justice). All the other meds discussed here I have tried one big fat FAIL! My only real symptom is PAIN but all these meds do is muddle you up so you start reporting all kinds of weird stuff.

The only thing that works for me and why I must be med and substance free is Wise-Anderson Protocol. You must eat well and build strength so you can exercise daily. Over time this backs down with this. It does not seem to go away 100% (you need to be in control) but it should back down to a controllable point somewhat like diabetes control.

Please the very worst thing you can do is become a junky, eat bad and not take exercise. If you are on a pile of meds that have zero chronic prostatitis / chronic pelvic pain syndrome studies back them then you are a junky. If you eat nothing but take away you are eating crap that will not help you heal. If you are lazy and doing nothing your pelvis will remain tight. If you WORRY about chronic prostatitis / chronic pelvic pain syndrome all day long and think into your pelvis all day long it will hurt way more than it should. Be very careful if this describes your chronic prostatitis / chronic pelvic pain syndrome healing efforts. Early days been here and it nearly killed me. Be very careful of traditional chronic prostatitis / chronic pelvic pain syndrome medicine.

[burnout]

@yoink15
I have very short hamstrings myself and can't touch my toes. How do you perform deep hamstring stretches?
I only know and tried the kind of hamstring stretch where you lie flat on your back and rise one leg all the way up in the air:

[Mike Kavo]

There are many ways just google.

http://www.teachpe.com/stretching/thigh_stretches.php

That one is good though you show here I do it daily many times over. That is a very important stretch for chronic prostatitis / chronic pelvic pain syndrome as the muscles all work in trains and you are real close in to the pelvic muscles there. This should be on your daily list. A partner can help you.

The trick though is to go into the stretch very relaxed until you feel the stretch reflex. The point at which your body says "Wow, wow, hold on, stop this right now, you trying to tear me off". At that point stop and relax do not force further breathe. Now wait a little bit, relax, and ever so slightly and slowly push on a little bit and hold. Then as you breath out, come out the stretch as you went in, feeling relaxed and letting go of any tension. The letting go bit should relax the entire train to a degree and in that your CPPS. As time passes the stretch reflex point will alter and can alter dramatically - look at gymnasts.

You must be gentle at all times stretching it is a calming soothing process (some calm music is a real boon) if you are in pain or it hurts you are doing it all wrong. Slowly you do get into shape. You will be touching toes in no time at all just take it easy.

Lastly careful with meds - especially pain killers. My experience is using any meds for chronic prostatitis / chronic pelvic pain syndrome with Wise-Anderson Protocol retards the healing process and can even make it impossible. If you find a muscle hurts during starting Wise-Anderson Protocol simply try a little voltarol gel or a message oil works; wonders before you reach for meds. Aches and pain starting Wise-Anderson Protocol are inevitable if you have been protecting your CPPS, but they go away in time.

[elitynski]

Mike - can you comment on what kind of healthy vs. crappy diet you are referring to?

[CMT23]

Thought I would just add another observation here. Many times I can be sitting for awhile and my symptoms kind of let go - almost don't notice them at all. (Other times extended sitting makes my symptoms much worse - like on a long flight). But ALWAYS as soon as I stand up the sensation to urinate immediately hits me. It's to the point that when I do get the sitting relief, I simply avoid moving because it feels so incredibly nice to feel nothing even if its just for a few minutes. The same thing sometimes happen after a hot bath and relaxation. I am lying there feeling really quite good - just a very light sensation of needing to urinate. Then I get up and boom - the sensation sets in at a level that is much more severe.

The same thing often happens during a massage where I feel almost symptom free the whole time. Then I have to get up and the symptoms come right back.

What is the thinking on what is going on here? In my more depressed days I imagine there is some growth or something inside of me that is pushing against my bladder as I stand up and move (A growth that scans and MRI's and x rays have all somehow missed). In my more positive moments I think that this is good evidence that all I have is a muscle tension issue. When my muscles really have the chance to release tension and relax, the symptoms often times slowly subside. It would also make sense that Valium, Klonopin, and Baclofen all bring very obvious relief to me as does alcohol (initially, before it gets running through my system at which point it seems to very much irritate things).

Any thoughts or comments? Similar experiences?

[webslave]

Then I get up and boom - the sensation sets in at a level that is much more severe.

Once you start activating the nerves, cross talk does the rest. Google nerve cross talk.