No pain - just constant sensation of needing to urinate

[CMT23]

The Chiro would say the same thing about an Internet board advising meditation and anal massage :)

In all seriousness, when a professional looks you in the eye and says that it is highly likely that you have this and that, it is very hard to jut ignore them. I wanted an MRI of my lower back anyway. May still go and get pelvis and abdomen.

Next stop is a neurologist. All the while I am doing the relaxation twice daily and on all kinds of supplements including any accredited quercetin product which don't seem to have done much as of yet.

There are times during the relaxation when I feel much better. Recently I have experienced an off sensation of a muscle in the penis twitching uncontrollably as I relax. What does it all mean? I don't know, but hopefully it is all crystal clear one day soon.

I don't do the Internal PT because it causes extreme flare ups.

[webslave]

Chiropractors are physical therapists with pretensions, that's all. The field of "chiropractic" was founded around 100 years ago by a so-called "magnetic healer", who hypothesized that manual manipulation of the spine could cure disease. Talk about quackery! And they can seriously injure patients as well.

If all you have garnered from this forum is that we advocate meditation and "anal massage", you are obviously wasting your time here.

[CMT23]

What I understand from this forum is that my problem MAY be caused by muscles in the pelvic floor that are dysfunctioning. Trigger points may have developed, especially around the prostate.

Steps to recovery include:
Daily relaxation exercises
Internal PT (not agreed on by everyone)
Hot baths
Stretching
Reducing anxiety and stress in general
Some prescription drugs have helped some people

However, one can not be sure if they will be helped by the above until they follow a daily program for 6 -12 months and possibly longer.

I don't think I'm wasting my time here. I'm learning a lot from you and other people and slowly piecing this together. I'm following leads that make sense even if they aren't in line with the above. And all along I am doing all of the above minus the internal PT because it causes severe flares.

This may very well be caused by muscle tension and anxiety and I am pursuing that path. But how can I draw any conclusions when I am still in constant discomfort and no one can tell me with absolute certainty what is causing my symptoms?

[webslave]

And all along I am doing all of the above minus the internal PT because it causes severe flares.

What does that tell you?

[CMT23]

And all along I am doing all of the above minus the internal PT because it causes severe flares.

What does that tell you?

It tells me that there is a problem in that area with those muscles. What is causing it and what needs to be done to remedy the problem is where I am still undecided. Do I do the internal PT even though it makes me feel absolutely horrible for days at a time or will the relaxation and stretching be enough?

Chiro just called to tell me that he has consulted top neurologist in Asia and that this is surely caused by tiny lesions in the sacral plexus that can't be picked up on MRI. Surgery would be very dangerous. He told me to stop looking and learn to cope with it as nothing can be done. He further said this has nothing to do with muscles and tension and that he would not recommend that I pursue that path.
I think that's even worse than the Uro who told me the solution lies in playing golf.

And he's basing it all on negative MRIs and some tests of the way my S2 area behaves when he does the Chiro tests.

Anyway, comments on the internal PT are welcome. Do I suffer through it or just continue with the relaxation as Tim Parks did?

[webslave]

Before you take any more advice about lesions on your sacral nerves from a chiropractor, get yourself to the USA and have your pelvis assessed by one of the many expert PTs. The PT who works for Wise is one of the best, if not the best, but there are many others mentioned on this forum.

Thailand is devoid of this sort of expertise, AFAIK.

Lesions on nerves would not cause a flare when muscles are prodded and poked.

Continuing like Tim Parks is an option, but then go the whole hog, with meditation and the whole trip into yourself to discover what's making you tense at a very deep level. It could be a long trip inward, and not one I'd embark on when I'm advised I have nerve lesions. Get that sorted out first. Be satisfied in your own mind what's really going on. At the very least, get a second opinion from a neurologist (and not from the neurologist the chiro recommends!)

[Burner2k]

CMT23,
I would second webslave's opinion on visiting a good neurologist to get it sorted out. I am still waiting for the follow up appointment with my neurologist (6 weeks from now or I may visit another neurologist if I think I can't wait) to get some imaging studies.

Glad to hear that your MRI results are normal.

[Jay]

Hi,

I'd have to concur that you really need to see another neurologist. Take your records and request the new one's perspective. Undetectable sacral spine lesions is one of the more exotic theories I've read on here, and certainly not one I'd take on the word of a chiropractor. I have no faith in that field of medicine, if it could be considered such. My uncle was lured into seeing one recently following a traumatic back injury, and the only thing he got out of the experience was bruised ribs.

It is not a bad idea to seek answers, but you have to be careful about where you settle. Some doctors feel that they must tell you something before they send you along your way, usually a diagnosis which explains their inability to 'fix' you. We've all been through it. I have been told it was in my head, that I had an infection, that I had arthritis (?!), that I needed the core of my prostate burned with a microwave treatment, etc etc.

Never would I accept the statement that you just have to learn to live with it, because there are always reasonable steps, even if it comes down to pain management.

[CMT23]

Thanks for the comments and thoughts. It feels like something that is muscular/tension/ energetic related. Yesterday it felt quite good for most of the day and after sex last night and sleeping a little later than usual, it immediately felt worse and today is very uncomfortable. It is always on edge like that. If I am perfectly rested and have the right balance of exercise, then I can feel decent most of the time.

I will go see a Neurologist just in case there is a neurological problem at play that can be identified. The lesions don't make sense to me, especially now that the MRI has come back negative, but it is something that I wanted to rule out. He has no answer for the fact that pressing those muscles causes an instantaneous flare up apart from the comments that 'that would happen to anyone', which I think quite simply is not true.

Webslave, I have seen Tim Sawyer many years ago, but didn't follow the protocol. Guess I wasn't in enough discomfort yet and kind of just hoped that it would go away on its own. I will probably go see him this Summer in Santa Rosa, at least to hear from an expert in the field as to what he thinks is currently going on.

I am still rather confused as to whether one should endure the flare ups that internal PT causes or whether one should take that as a hint that this is not something that your body can handle and instead focus on the relaxation/meditation.

[Burner2k]

CMT23,

I saw your post on a different thread and didn't want to hijack that thread by my response. I saw Tim Sawyer in Sept 2010. I had to leave US for good by end of Sept 2010 and we could just squeeze 2 sessions. A week earlier before my first appointment with him, I started being on Baclofen. And it had given me considerable relief. So by the time I saw him, I was under the impression Baclofen has set me right :)

Let me start by saying that Tim Sawyer is a wonderful man. He even offered me another free copy of A HEADACHE IN THE PELVIS book to take with me to India, to guide any potential PTs who would want to treat me here. He did an evaluation of all possible trigger points, both internal & external. Just like others PT, he couldn't find anything points external which was recreating the sensations. However internally he found region around the rim of the prostate when palpated make me wanna pee. Sawyer said, there was no need for me to attend the clinic as my case is mild and I should be able to control my symptoms via regular trigger point release (1-2 times/week). At least for me at that time, I never had flares after PT. Anyway, for the following session he had asked me to bring a crystal wand with him so that we could try to hit the trigger points which would enable me to work on myself. We tried in that session but I could never hit the spots.

The point I am trying to make here is, the folks at Santa Rosa would probably say that you have chronic prostatitis / chronic pelvic pain syndrome based on your response to palpation of usual trigger point locations. They do not have any other means to determine if our condition is actually a chronic prostatitis / chronic pelvic pain syndrome or a neurological/neuromuscular disorder with overlapping CP/CPPS symptoms. Please do exhaust all options at your home country before making the trip to Santa Rose. Alternatively, you can email Tim Sawyer and present him your case. Highlight the fact that internal PT gives you tremendous flares and what he makes out of it.

I have an appointment with a neurologist whose super speciality is Neuromuscular disorders next Monday. I am gonna let him know that I have seen enough doctors who have not been able to help me and he is the last doctor I am seeing regarding this. I will update you the outcome later. Just wanted to give my 2 cents regarding Tim Sawyer.

[CMT23]

Hi Burner. Sorry for the very late reply. I found that constantly coming to this site seemed to make me think about my symptoms more and perhaps even make them worse. Since last posting, I went to a Neurologist (didn't find anything) and I got complete blood tests for hormones and micronutrients. I wanted the latter anyway as I was getting sick quite often.

Anyway, I was found to be deficient in many different nutrients and started taking vitamins for them. My testosterone to estrogen ratio was 15:1. The doctor said that in some people this may cause restriction of blood vessels, which may lead to these symptoms in certain people. So I started weekly testosterone injections a couple months back. Over all I feel better, but I would not at all say that I feel cured, and really I am not sure if the testosterone is helping or not. There seems to be fewer instances lately where I am in extreme discomfort. But the discomfort is still always there.

I am also doing HGH injections every night as that was found to be low. And I am taking HTP-5 and L-Theanine daily.

And I have just about completed 4 months of Quercetin. (I would say no real improvement in my case)

Also, just completed 2 months of a product called Bladder Support. No amazing improvement.

Also did a month long course of Ciprofloxacin on the advise of another doctor. Finished 2 months ago. No improvement.

I also started daily stretching and 20 minutes relaxation 2x day. Lately it's been only once a day.

Anyway, I still feel that there is something to the trigger point/muscle tension theory so I am going to the clinic in Santa Rosa next month. I actually saw Tim Sawyer for multiple appointments in 2003. No flare ups at that time. I guess back then it wasn't bothering me enough as I didn't stick with it and didn't do any relaxation or stretching at all.

I am happy to go to the clinic, but also a little worried.

If this doesn't work, where does that leave me?

Will I experience flare ups from the internal PT? (A HEADACHE IN THE PELVIS book talks about the possibility of flare ups happening dozens and dozens of times).

If they last for days as happened when I poked around with a prostate massager, then I don't know if I can handle it.

Will I be able to do 45 minutes twice a day relaxation? I know people would say that if you are in this much discomfort, how could you not do it and that's the attitude I have to take. But 20 minutes twice daily now is a struggle mentally sometimes. I can find the time, but it's getting myself to lie there and do it. I guess that is my challenge.

And then in the back of my head, of course I have doubt. No one can tell me for sure what is happening in my body. There is enough evidence to support the pelvic muscle tension theory, but until I see real results, I can't feel 100% confident.

I have tried so many things that I thought would work, it's almost like I don't want to get my hopes up. But at the end of the day, I do feel that the Santa Rosa clinic is the right track.

[Burner2k]

CMT23,
I agree with your thoughts that this might be related to Pelvic floor spasms and trigger points. For me Baclofen/Lyrica + Hot baths have been a life saver. I stopped taking the medications for last 3-4 days and I can sense an increase in the symptoms. Trouble is medications of lately started to give me constipation. Need to find a solution for constipation.

Good that you are planning to visit clinic in Santa Rosa. I am sure it do you good. Its quite difficult for me to visit US as of now. I am pretty sure I would not get a visa to visit the US. If things get really bad here, that is something I might give some thoughts. Plus I have a PT here who is ready to do internal work (trouble is he is not too good at it).

I am sure Dr. Wise & Tim will help you with what needs to be in case of having flares after PT.

You don't have to answer this question if you are not comfortable. How do you manage to work with this condition? THis is the main thing which really scares me about taking up work again. What if the symptoms reappear and if I end up losing the job again to this condition.

Anyway keep me posted.

[CMT23]

Hi Burner2K. I have not tried Baclofen or Lyrica so it's good to hear that you are getting some good results with them. I will add them to the list as perhaps something to try in the future. Did you ever try any Alpha Blockers? I tried one pill of Uroxatral and it literally knocked me out like a tranquilizer after making me very dizzy. So I didn't take anymore. The package says that the drowsiness will go away after awhile, but it was kind of disturbing. I guess to test their theory, I would have to stay at home for a few days taking these until I could see if the side effects would subside.

Also, do you do the daily relaxation?

As far as work, when the symptoms are in the standard range, it is a constant discomfort, but I can manage it. I am lucky that I basically can make my own hours and my commute from home to office is all of about 15 minutes. To a very real extent, I run my life around my symptoms. For example, my co workers may be going out after work, but I know that if I go home at 6, lie down, do some stretching, take a bath, and then get 8 or 9 hours sleep, that the next day will usually be manageable. If I push myself at all and get 5 hours sleep instead of 8 for example, then the next day is usually very, very uncomfortable. In those cases, there have been times where I simply leave at 2 in the afternoon, go home, take a hot bath, 5mg valium, lie down, and wait. I'm lucky that I am at management level and there is no one in my office who will ask me where I am going.

I'm lucky in that I can manage my symptoms in this way, but of course it can be disheartening at times. I do feel that it is something to do with the pelvic floor muscles and also the nervous system. When I think back, the times that it has been at the extremely unbearable level are times when I was going through emotional distress - rejected by a girlfriend, faced with big legal problems, unsure about getting married etc. But there are times when everything is going well and within minutes I go from moderate discomfort to severe. It is difficult to understand sometimes.

Can I ask what dosages of Baclofen and Lyrica you have been taking? To what extend does this alleviate your symptoms?

Best of luck!

[gl0342]

CMT23

Alpha Blockers can have side those kinds of effects, but they can also help you reduce some of the symptoms (especially tip of penis irritation and reduced flow). The recommendation is to take it one hour before bedtime, it can even make you sleep better. You could also try Flomax. But if you go to Santa Rosa next months, then maybe best is to wait until you come back, and see how you do with their protocol (I did it last week, and while I have less sitting pains which allows me to get back to normal work, I am not yet ready to stop Uroxatral yet, still too early in the process, I am concerned the tip of penis thing would come back).

Good luck, if you have time would be interesting to learn about your experience as well.

George

[Burner2k]

OK,
Baclofen & Lyrica have helped me tremendously but I have to say, them pills seem to have vagaries of their own and sometimes it seems like they ain't doing much. I dunno...I just keeping popping one in hope.

Also I never take both Baclofen & Lyrica i.e. it is either Baclofen or Lyrica. Usually, post ejaculation, I take Baclofen as its a muscle relaxant and other days I take Lyrica. Off lately, Lyrica sort of giving me a little bit of constipation. Planning to take Natural Calm supplement on advise of a fellow member on this board.

As far as the dosage, its either one 10mg Baclofen at night or one 75mg Lyrica at night just before going to bed. Also, I take 75 mins of hot bath everyday...so far kind of helping me calm down the urge.

As far as relief is concerned, it minimizes the urge to a level where it is not distracting and it keeps it this way for a lot longer than otherwise. I have noticed as far as 2x extension in time before voiding after being on these pills.

Dude, its awesome that you can be flexible with your work. And yep, it helps to be in managerial position. For me, being a little experienced than entry level, I don't think I would in a position similar to yours. Thats why I am looking at getting into low stress jobs. I have worked really hard to be where I was before this thing happened and just depresses me to think about having to give up a large part of it.

Hope this helps.