No pain - just constant sensation of needing to urinate

[GARYS]

Hey CMT23, I can relate to everything you are saying!! I've had this about the same amount of time you have and I think your one month longer into the protocol than I am. It's crazy how every time you tell yourself this is all paying off and your feeling a little better, it can just act up out if nowhere!! It can really mess with your mind and you question if it's working or not. Tim told me that this will definitely test your patience and to just continue working gently. I can also relate about medications, I have thought about trying some to help while my body is healing but I am so fatigued all the time that I know I couldn't tolerate any side effects that might add to it. I always think about when Dr. Wise was asked how he dealt with it for over twenty years, that's kind of a silly question because what's the other option. All we can do is continue with what we are doing for as long as it takes. We will get there!! Just wanted to let you know you're not alone with what you're feeling; I have these exact same thoughts. Hang in there!!

[CMT23]

If you try Uroxatral then give it a go for 3 months before deciding it's not helping. Don't drive for the first week while taking it because it can really mess you up for a while.

If you live in Bangkok, I wonder what sort of diet you are following? Thai food is some of the hottest in the world. That's a big problem if you are trying to get an inflamed area in the bladder or urethra to settle.

I may try it for three months. I eat very little Thai food and next to no spicy food. At any rate, I have never experienced any correlation between eating spicy food and an increase in the severity of symptoms. Alcohol is a different story. Caffeine seems to make it a bit worse, but there have been many days where I have felt good and had a cup of coffee and didn't suddenly feel bad (as with alcohol). Coffee does sent me to urinate sometime every 30 minutes for a few hours.

[CMT23]

Another quick update. That last flare went on for 3 weeks. Now I am back to my usual level of discomfort. Sometimes I can't believe that this has been going on since I was 17.

Anyway, I am coming up on 9 months of the protocol. Still do relaxation 30 mins. twice a day, stretching for about the same time, internal massage 3 x week, and cardio 3 or 4 times a week. I do the relaxation maybe 90% of the time and internal wand stuff maybe 95% of the time. So far no breakthroughs. There are times that I feel good and times that I feel bad. I can't say with certainty that I feel any different now than I would have if I had not done the protocol. All I can say with certainty is that is takes a lot more pressure with the internal wand to replicate my symptoms now.

Two weeks ago I started Uroxatral. I take one every night. Side effects were bad the first few days, but don't bother me now. No improvement yet.

10 days ago I started Imipramine as I thought I remembered some relief from this in 1998. Did one week at 25mg. And the last few days at 50mg. No improvement yet. Planning to go to 75mg and maybe 100mg.

10 days ago I also started Deanxit which is an anti-anxiety drug. Can't remember dose. So far no real improvement in my symptoms, but maybe my overall mood is a bit better.

So of course I am disappointed that 9 months on and I am still symptomatic. Would be much easier if the symptoms slowly died off over time. But I still do think I am on the right track. Just not sure how long this is going to take. Would also be much, much easier if someone could tell me with certainty that for example, "in one year you will be symptom free". Not knowing is tough.

I'll continue to keep updating here.

[CMT23]

I'm considering doing the internal wand everyday. I know the clinic instructions were 3x weekly but I have read of people doing it everyday without any problems and I am thinking that perhaps hitting the trouble points everyday will help to move along my recovery. Is this reasonable or after 9 months of the protocol am I being impatient?

[CMT23]

Hey CMT23, I can relate to everything you are saying!! I've had this about the same amount of time you have and I think your one month longer into the protocol than I am. It's crazy how every time you tell yourself this is all paying off and your feeling a little better, it can just act up out if nowhere!! It can really mess with your mind and you question if it's working or not. Tim told me that this will definitely test your patience and to just continue working gently. I can also relate about medications, I have thought about trying some to help while my body is healing but I am so fatigued all the time that I know I couldn't tolerate any side effects that might add to it. I always think about when Dr. Wise was asked how he dealt with it for over twenty years, that's kind of a silly question because what's the other option. All we can do is continue with what we are doing for as long as it takes. We will get there!! Just wanted to let you know you're not alone with what you're feeling; I have these exact same thoughts. Hang in there!!

Hi Gary. Sounds like we're both in a similar situation. Definitely it tests one's patience! At least after 16 years I feel that I am on the right track. When I have windows where I feel good I realize how much of an impact the symptoms have had on my life. But can't dwell on that too long. Just have to keep looking forward. Keep me updated on your progress and best of luck!

[webslave]

I'm considering doing the internal wand everyday. I know the clinic instructions were 3x weekly but I have read of people doing it everyday without any problems and I am thinking that perhaps hitting the trouble points everyday will help to move along my recovery. Is this reasonable or after 9 months of the protocol am I being impatient?

When I get TrPts in my shoulders, from working on the computer, I find that treating daily, and even several times a day, is best.

[GARYS]

I asked Dr. Wise a out this about a month ago. He more or less said to try it daily for a few days and take a day off and see how I feel. I haven't tried it yet but when work slows down I will try it. Good luck and let me know.

[CMT23]

I asked Dr. Wise a out this about a month ago. He more or less said to try it daily for a few days and take a day off and see how I feel. I haven't tried it yet but when work slows down I will try it. Good luck and let me know.

There are 4 points high up near the prostate which recreate my symptoms exactly. I am thinking of hitting those every day which should take 15 minutes or so. And then every other day I will do the longer version where I do the points half an inch down and stretch off to the side. I'll let you know how it goes.

[CMT23]

A quick update. For the last couple weeks I have had pretty reliable relief for the first few hours of each day (very little discomfort) the afternoon and evening has been uncomfortable, but not horrible and then at night I have been able to kind of wind down and quiet the symptoms. I am doing the internal trigger point wand every night. Every other day I do the longer version where I hit 14 points. What I have added is just hitting the 6 points up high that reliably recreate my symptoms (90 seconds each). I always start with stretching, then internal, then follow up with a hot bath and 30 mins. relaxation. I continue to take Imipramine 75mg at night along with Deanxit 2x day and Xatral (almost 2 months already). (The stinging ejaculation that these meds caused seems to have subsided).

During the past 2 weeks, there have been times where I have been in a great deal of discomfort, but overall I feel pretty good. There is certainly a lot of time when I tell myself 'wow, if I felt like this all the time, I wouldn't complain at all'. But then suddenly (usually after urinating in the early afternoon) I feel worse again and I wonder if I will ever truly get over this.

(Also, I forgot to mention I have been taking 2.5mg Valium when things start feeling bad - usually in the afternoon or evening 2 times a week. Valium seems to almost always help).

Anyway, I will continue on and keep updating here from time to time.

[CMT23]

Okay, I'm 9 days from reaching a year of doing the protocol so I thought I would post an update. Am I cured? No. Am I better. Probably. When I say that I am probably better I mean that I seem to be able to recover from flares more quickly and get back to the range of discomfort rather than a constant feeling of urgency that prevents sleep and thought about anything else. Whereas before I could be locked in that sensation for many days and nights, it seems now that within a day of feeling very bad, I can usually feel better (but still experiencing the feeling of needing to urinate). There also seem to be more windows in the day where I feel a lot of relief. Unfortunately it never lasts for more than a few hours at a time.

I should provide more info. I do the relaxation 30 mins. Twice a day. I stretch for 30 minutes daily. I do the internal wand 3 times a week. I probably do the protocol 85% of the time. The rest I might have a late night at work or social commitments etc. I am also on Tofranil and Deanxit. (A skeptic would probably say that any relief is from these meds). I took Xatral for 3 months with no improvement. I started taking Baclofen recently 10mg 3 x day and experienced significant relief. However, it left me feeling like a zombie. I have dropped to 10mg at night. We'll see what happens.

Compared with a year ago I can absolutely apply about 30 times the amount of pressure on the stubborn spots with the wand. That tells me that there has been a legitimate shift physically. Pushing on the area high and to the left and right of the prostate still mimics my symptoms, but it takes way more pressure now. Taking a hot bath and lying down and doing the relaxation normally brings significant relief.

Whenever I push myself as far as working extra long hours, taking a long flight, missing sleep etc. The symptoms almost always become worse. When I am happy and well rested and exercising regularly, they are generally better. It's been that way for 17 years.

The frequency and urgency is not much better after one year. But I would live with those symptoms if the constant sensation of needing to urinate would leave me.

So in one respect I am disappointed. I had hoped that a full year would cure me. But I have seen progress and I am happy that at least the protocol is doable if you decide to do it. And I will continue doing it.

[yoink15]

Hey friend,

Just wanted to say I'm right there with you. I'm just passing my 10th month of doing the Wise-Anderson Protocol protocol and I as well am definitely not "cured". Am I better? Like you said...probably. For me, the urinary frequency has come down to much more manageable levels. Most days and times, I can go several hours without peeing...sometimes three or four hours at a time. However, my prostate-centric pain is still ever present. It's actually a completely *different* sort of pain than when I started...which is...baffling to me. It's hard to describe but now the pain is deep within the perineum and around the testicles and where my right leg meets my body...it's basically my primary complaint now.

I've also noticed that almost every single area of my internal pelvis seems "relaxed"...in that pressure from the Wise-Anderson Protocol wand doesn't really generate much sensation now. Sure it hurts a little when I apply pressure but nothing remotely like it was when I started. (I had to grit my teeth just to apply a little pressure in there 10 months ago). I should note however that there is one still very tender spot in my internal pelvis..and it's very confusing to me. It's basically very VERY deep and high up in my pelvis. I can reach that area if I set the wand "stopper" to make the length of the wand a good two full inches beyond the length of my middle finger. This is clearly an area that no human could ever reach with their own finger, or the finger of a physical therapist. So my question is...is this area still "pelvic muscle"? Or am I reaching so far in there that I'm beyond the pelvic floor and I'm pressing on my...bladder? I have no idea. The reason that I'm concerned about this is that when I do go that deep, I get a COMPLETELY different sensation up there when I press on it. It VERY closely recreates my symptoms...so I figure that's a clue that I'm on the right track. But then again it's way far beyond anything I've ever seen on any of the diagrams in "A Headache in the Pelvis"...and also it flares me IMMENSELY when I do it. And it just feels....different. Completely unlike the the rest of my pelvic floor. Sometimes I think only Tim Sawyer can help me with this one. I was quite upset when I went up to Santa Rosa two weeks ago and he couldn't see me because he accidentally double booked me. I'm planning on going up there next month to try and see him AGAIN...just to ask him about this issue.

Lately, I've been having some moderately good results taking a combination of "ProstaFlo" (which is basically flower pollen) and "Cystoprotek" (which is basically Quercetin and Chondroitin Sulfate and some other stuff).

I still struggle with sleep every night and so fatigue makes me feel like a zombie every day.

Stay strong my friend. This has to get better eventually for the both of us. We're almost the same age and it's impossible that we'll be spending the next 60 years of our lives in pelvic pain. It just looks like we're both on the "two year plan" with our CPPS.

[fobo]

Hello yoink15
I think the fact that you have brought urinary frequency to such manageable levels, I mean 3-4 hours during day without peeing seems remarkable to me. Unfortunately I am still not ready to go for this protocol on the Netherlands clinic in Europe (I think mine looks like mild IC symptoms)

I don't know, does anybody came along to something else that might work and could help me with urinary-frequency. Like a book or a DVD with exercises that I could order and do it at home?

Regards

[CMT23]

Hi yoink. It sounds like you do need to see Tim again and see if those points higher up are something to be massaged or left alone. Also of course to get his opinion on the new sensation that has developed.

For me, I have been at this for 1 year and 10 days and I am starting to get a bit depressed. While I can apply much more pressure with the wand now, over the past couple of weeks I have experienced many days and nights with intense symptoms. Sometimes I have to cut meetings short because the intensity of the sensation of needing to urinate is so distracting. A few nights ago I went to a concert and decided to have a few drinks for the first time in awhile. Whiskey soda. Anyway, for the first two hours my symptoms subsided greatly. The the urge to urinate built up and from there I was going every 30 minutes for 3 or 4 hours. Was with friends in a taxi on the way home. I went right before getting into the taxi. Then within minutes, stuck in traffic with nowhere to go, the urgent urge to urinate returned. The next two days were pretty bad too. Today seems to be calming down a bit. But I am thinking to myself basically WTF? I've tried endless medications. I am on Baclofen, Deanxit, and Tofranil now. I do stretching daily. I do relaxation 2 x 30 minutes daily and I do the internal stuff 3 x a week. I have stuck to that schedule 90% of the time for the past year and 10 days. And still over the last two weeks I have experienced so much discomfort.

Definitely when I went to the clinic last year I thought that after a year of the protocol I would be feeling so much better. Well I haven't had the extreme discomfort that sometimes sent me to the emergency room in the past, but my life still revolves around this and I can't even have a meeting without getting up multiple times to go to the bathroom. And I can't even have a few drinks without it triggering extreme frequency.

So nothing much I can do at this point except keep doing the protocol, but pretty disappointing that I haven't improved more than this.

I'll keep everyone updated here.

[dvdx2]

I can really empathise with you; the lack of progress with this condition can really make you low, but it is so anxiety linked that I find small changes in mood can really affect it. I dont have frequency, but I get constant feelings of urgency/pressure and discomfort after urination, along with thigh/nerve pain. Its a constant struggle to maintain good metal health in a flare up and this must be addressed constantly.

Good luck - and let us know how you get on

[CMT23]

Thanks for this dvdx2. Yes, it's beyond frustrating. Trying to be patient, but after one year of the protocol I can't say that I am even 50% better. There are times that I feel okay, but if I push myself in any way - lack of sleep, stressful meetings, skipping a meal, drinking alcohol etc. the sensation becomes incredibly uncomfortable. And even when I do everything right sometimes the sensation just becomes overwhelming.

I guess I should be thankful that I do get reliable relief from a hot bath and lying down. That and Valium or Klonopin. But I really, really want to be recovered, which I would define as being able to sit in a car for 4 or 5 hours without even thinking about needing to urinate.

Since I still have hope, I will continue the protocol.

Keep me updated.