No pain - just constant sensation of needing to urinate

[Burner2k]

Hey CMT23,
I noticed that you may have tried Relax All with Phenibut supplement back in 2011. Did it help in alleviating your symptoms? Can you elaborate more on the dosage you took etc.?

Thx

[CMT23]

Hi Burner. I tend to stay off the forum too as it just reminds me of my situation a little too much. But when it flares up I tend to come back looking for a cure or the like. Sorry to hear that the year didn't start well. Hopefully it has gotten better. I tried Lyrica a couple times. First time I think I remember thinking I was 'cured' for a couple days. Then symptoms came right back no matter how high I went with the dose. GABA also tried. I guess it's not so scientific as I haven't kept a journal of doses for each medication/supplement tried.

I started using a far infrared dome a few months ago at least once a day over the pelvic area. Can't say there has been any big shift.

I will start the PT and relaxation again soon, but as I said before, after being very dedicated about it for 12-18 months and not feeling much different, I am somewhat discouraged. Still, you can't discount that pressing on the muscles next to the prostate replicates my symptoms.

For other reasons, the last 5 weeks I have done a strict anti-candida diet - no coffee, dairy, wheat, sugar, fruit, alcohol and more. And there hasn't been an improvement in symptoms. I guess cross diet off the list...

Clonazepam at night when it's flaring lets me sleep and lets my body reset in most cases. Exercise continues to be important in kind of keeping me in balance and the symptoms at bay.

I can't remember if I reported here before, but I had Botox injections into the trigger points (via the rectum - not fun!) awhile back and that didn't help.

So that's where I am not. At least it fluctuates and there are times when it doesn't feel so bad. But it does become depressing to constantly avoid certain social events in favour of a bath and sleep or to go to said events and be uncomfortable the whole time. I still have hope that I will get to the bottom of it one day.

Keep me updated.

[CMT23]

Hey CMT23,
I noticed that you may have tried Relax All with Phenibut supplement back in 2011. Did it help in alleviating your symptoms? Can you elaborate more on the dosage you took etc.?

Thx

No, it didn't help. I'm sorry I can't remember the dosage, but most likely, whatever they recommend on the label.

[CMT23]

Regarding your ani levator pain, have you had any biofeedback tests to see if your resting pelvic tone is higher than normal? That could help reassure you that pelvic floor tension is involved somehow. (For example, when I went to a PT recently she did a diagnostic biofeedback session and found that my resting pelvic floor tone was about 10x the normal resting tone.)

Hi there. No I haven't. I'm in Bangkok and this kind of thing is like Alien talk to the doctors here. Also, according to Dr. David Wise, it's not that important to test this. Basically when you press on the trigger points and you replicate your symptoms, you know that's the problem. I can do this in my case, but after 12-18 months of self PT and relaxation, I didn't have any major shift and pretty much stopped. As it's the only thing that kind of makes sense in my case (so many meds have failed and all tests/scans etc. have been negative) I will probably start again soon.

[Burner2k]

Hi CMT23,
I am sorry to hear that urinary symptoms are still bothering you. It is tough...

I am doing OK for the most part. Not as good as I was for the last couple of years though! This year, I have my good & bad days...more of good days so far. Thankfully (touch wood), the symptoms don't bother me much during daylight hours.

I feel that if the weather becomes nippy, my symptoms slightly flare up. Of course I not talking about -10ºC but even a modest +17º to +18ºC feels nippy here when in summer the highs were up at around +39 to +40ºC.

Hot baths still continue to help me. I am not on any kind of meds (take an occasional Clonazepam 0.5mg to reduce anxiety). I may have to try GABA supplements more aggressively and see if it can help reduce overall spasms. I somehow perceive a connection between spasms and urinary flare ups (could be all up in my head).

Will report my experiences here. I tend to do internal around once or twice a week...just to keep everything loose in there.

I cannot agree with you more. Exercise helps me a lot in relieving my symptoms. I do some light running & walking and it really bumps my internal body temp and thus brings in relief.

Yeah, I don't see any major connection between diet & urinary symptoms. I have pretty much tried most major diets... gluten free, caffeine/chocolate/tomato/citrus free and even when things were in the worse, none of them have helped in reducing the symptoms. Similarly, last year I used to have coffee once per day and it definitely did not result in any major flare ups. Anyways, good thing is that I have quit liquor completely. At least my liver won't feel any extraneous stress

I know you have tried Baclofen some time and it was not of much help but I think you should talk to a doc and explore anti-spasmodic medications. Not the ones that target the smooth muscles of the bladder (I have tried them and found them unhelpful) but the ones which relieves overall muscle spasms. The reason I emphasize the above is, one pelvic pain PT in SFO (US) told me that she could feel my bladder & surrounding muscles in spasms when she had her finger near the region. And when I got on to Baclofen, it did help me bring in about 80% of the relief.

Let us know how you are doing overall. Lets just keep on exchanging notes on the forum.

[CMT23]

Hi Burner,

Back again as the last 5 days have been pretty difficult! It seems to come and go in waves (although it never really goes away, just drops to a level where I can ignore it somewhat) and even sleep without any meds. It seems stress and being mentally and physically worn down brings on the very intense flares. This is day number 5 of just an incredibly intense sensation of needing to urinate coming from the tip of the penis and nowhere else. If you chopped off the tip, I imagine I would be cured!

Flare ups like this come with anxiety and of course that feeds into the symptoms and makes it worse. It's tough to accept that this has been going on or nearly 20 years now (admin feel free to update my signature - I'm 36 now). All I can think to do is go back to use of the wand three times a week, daily stretching, and 2 x daily relaxation. I did it all with complete dedication for over a year and felt I wasn't really getting results although there were times I was better - I think. I have been using the HeadSpace app for the relaxation. It's just so much easier to use in terms of pulling it up on an iphone or iPad than the device Dr. Wise hands out. Is one better than the other or is relaxation relaxation at the end of the day?

I did do a couple sessions with the wand this week and I get the same results - pressing on the anterior muscles high up and adjacent to the prostate exactly replicate my symptoms. These are the areas I am told refer to the tip of the penis. So I just wonder what I need to do to make them relax! For those who missed it, I tried Botox injections here with no luck (not a pleasant procedure).

I have experimented with so, so many meds and herbs and supplements. Baclofen just left me completely sedated without any real benefit. I will look at some other antispasmodics. Burner, are there any in particular that you have had success with?

When I stretch and sometimes get out of a hot bath and lie down, my penis and the surrounding muscles quiver uncontrollably. I like to think that this is a sign that the muscles are indeed too tight in that region - certainly this isn't normal. But why then did a year+ of internal and external physical therapy fail to make a big impact? Maybe I just gave up too soon and I needed 2 or 3 years.

I can't remember if I posted here before, but I spent $1,200 I didn't have on one of these

and used it twice a day for 30 minutes for a few months. Didn't cure me, but didn't have any big flare ups during that time that I can remember. Don't use it as regularly now and here I am in a big flare up. Not sure how scientific that is, but the theory behind far infrared seems sound in general.

For those reading wondering how to get immediate relief NOW, the only thing that lets me get through the night right now is Clonazepam (1 to 2mg) and during the day sometimes 5-10mg of Valium. Sometimes I add Tramadol, but I really hate the next day come down from Tramadol - feels like the ultimate depression for 2-3 days. Then I may go weeks without any drugs at all once my body comes out of the flare and I'm at my 'normal' level of discomfort.

If anyone, anywhere has found any other substances that work to bring some relief, please do share!

I've considered bladder distillations after reading stories on the IC forums, but it just doesn't seem to fit with my symptoms (I would try anyway if the procedure was less invasive). I can drink 1-2 vodkas with soda water and feel no increased discomfort - actually often a reduction in symptoms. That doesn't sound like something involving the inside wall of the bladder. Same for spicy foods. Coffee does make me urinate a few times an hour. But going off it for months or years doesn't bring any real improvement at all.

One other thing I thought I would mention, since this seems in many cases to be related to stress and nervous system hyper arousal, I tried the flotation tanks recently and really enjoy the experience. I am sure it has some benefit. I have no doubt that regular floating sessions would at least help to take the edge off and perhaps much more. Now if I could just afford 3-4 sessions a week.

I really do feel for anyone else going through this. It's incredibly difficult to feel so uncomfortable and look more or less fine. Even people who know that I have something going on don't really get it because when they need to pee, they pee and it's over and it's been that way for as long as they can remember. They can't truly relate to what it is like to have that feeling linger and sometimes become incredibly intense.

Please do share your experiences so together we may find some relief.

[maskdmirag]

I'm in a similar boat, although I do have some groin pain when the symptoms come on very strong.

Went to my gp and he did the normal feeling of the prostate and it didn't feel enlarged or inflamed.

I tried out Flomax, and it seemed to help with symptoms to an extent, but left me very lightheaded at random times of day. So I'm discontinuing it for now and am trying relaxation and stretches.

[CMT23]

Another random update. Pretty much the same situation. I feel better when exercising every day, both weights and cardio. But without Benzodiazepines, I'd be in real trouble. Valium can help to make a horrible day just uncomfortable and Clonazepam can let me sleep 10 hours. I may be addicted - at least dependent, but I don't know if I should feel bad about that. I'm just thankful that these substances exist. I've tried so many herbs, vitamins, therapies, devices, etc. - the only thing that gives obvious relief are Benzos.

The doctor here prescribed Morphine, the extended release type. I tried 30mg a couple times, but really don't feel it does much to take the edge off. Also interrupts my sleep. Codeine also doesn't really help. It's not that kind of 'pain' I suppose.

Tried riding the medical marijuana craze and I know there are hundreds of types, but I have yet to find one that relaxes me or makes me feel better in any way. In almost all cases, it ramps up my symptoms big time and that comes along with a general feeling of anxiety and thinking way too much.

I have started the internal work with the wand again. I can still exactly replicate my symptoms by pressing on the muscles adjacent to the prostate. I am now using the HeadSpace app for meditation 20 minutes a day. Will try to increase to twice a day. I know Dr. Wise's tapes are much longer - I find the device he provides quite difficult to navigate and the battery life is very poor. Perhaps I should take another look though. Some people out there say it's all about a guided relaxation (any type will do) and others say that you need to follow Dr. Wise's specific instructions. Of course I did that for over a year without any real results so I'm on the fence.

As usual, after ejaculation unless I lie down still and relaxed for 30 minutes or so, all the muscles in the perineum will be aching for hours. That's the only time I get any aching. So I am still convinced it's a muscle / nervous system issue. Just don't really know the precise solution!

If anyone comes across anything that provides some relief, please do post!

Admin - feel free to update my age - now 37! So this is 20 years of symptoms. Crazy to think about and don't wanna freak anyone out. But that's the reality of it. Thankfully I have found a way to live with it and manage it to some extent, but I can't even begin to describe the impact that it has had on my life in terms of my personality, work, friends, and general perspective on things.

[Burner2k]

Hey CMT23,
Thanks for posting an update. Its crazy to think how time flies even with conditions which reduce the quality of life. Its been 6 years since I have had this and thankfully, about 80% of those times, things have been manageable but there was time when I could only have day to day visibility of my life. Back when my symptoms were at its worst, 5 years of living with such quality of life was unthinkable.

Have to agree with you that we do have some drugs which "work" on us unlike some pain patients whom I know. For them, even drugs don't bring in the degree of expected relief.

The thing I really miss in this part of the world is access to qualified Pelvic Pain PT/Doctors. I hope the scene is slightly better in Thailand since you live in the capital and may have some access to Pelvic Pain medical professionals.

[CMT23]

Hey Burner2K. Unfortunately no one in Thailand has a clue about this condition. Even their traditional Thai herbs and massage and all that - they have never seen these symptoms and have tried various treatments without success. My symptoms continue to be up and down. The last week pretty horrible. The week before that, just mildly annoying. Very difficult to put my finger on why that is. I'm looking into the work David McCoid is doing http://www.freedomfrompelvicpain.com. He has a totally different approach than I've seen in the past, which seems to fit with the way my symptoms behave. Not trying to create some huge debate on this forum - just saying that this guy ridded himself of pelvic pain with these methods after having tried just about everything else. So I believe it's at least worth looking into. Best of luck to you and keep me updated.

[Burner2k]

Hi CMT23,
Thanks for posting that website of David McCoid. I do have weak core areas (abs & lower back) & I've been meaning to strengthen them. His is an interesting approach for sure and seems non-invasive...so no harm in trying I guess.

Do you know how we can learn more about the protocol before pouring money towards it? I guess Googling is one way. Will do it later.

Are you still doing Stanford/Wise-Anderson Protocol? I know it was of not much help to you earlier.

[CMT23]

Hi Burner. You can look into Nutritious Movement and Dynamic Contraction Technique. If muscles are the cause of your problem, then this could very well be the solution. It's cheap to do a couple Skype Sessions, get a program and then start on your own.

For me so far things have not improved. I've adjusted the exercises with David and do them every day. In most positions, I can feel the pelvic floor muscles fluttering, which I take as a sign that some tension is trying to let go. Of course disappointing that there are no results yet. But the problem has been going on for 20 years so it makes sense that it could take time to resolve.

I stuck with the Wise-Aderson protocol for around 15 months I believe. I simply didn't see progress. There were days when I felt better and days when I felt worse and as the months went by, there was no obvious reduction in overall discomfort. Nevertheless, I may try it again out of desperation. I did often get a reduction in symptoms when doing the progressive relaxation after a hot bath, but I can also get that same relief when using an app like HeadSpace.

I do think I felt better overall mentally during those 15 months because finally I really believed that I knew exactly what the problem was and how to solve it. If I went back to see them again, they would probably tell me to do longer sessions of progressive relaxation and continue the PT. Like I said, I may start again, but 15 months is a pretty decent amount of time to see if something is going to help.

I'm also doing Craniosacral therapy once a week and have done some EFT (Emotional Freedom Technique) stuff. I really don't know if I feel anxious and somewhat depressed because of the symptoms or if because I feel anxious and depressed, my symptoms appeared. I have to believe there is something physically wrong, but it seems no one knows for certain. I can find plenty of people who tell me it's emotional or psychological and others who swear it's physical and others yet who are sure it's a combination.

I also looked at Dr. Joe Dispenza's work and book You Are The Placebo. It's very exciting and empowering and lots of science behind it, but also very hard (for me) to do the meditations. It's different from the Progressive Relaxation. You have to imagine your future self and couple that with a very strong positive emotion. My mind just starts to get in the way, judging the whole process.

For me the fact remains that pressing adjacent to the prostate exactly recreates and exaggerators my symptoms and that's not normal. I hope that I am on the right track now and obviously for us all, it would be 1,000 times easier if a doctor could tell you for certain that in x months you will be fine.

The only relief has been from different Benzodiazepines (Valium and Klonopin mostly), but I've developed a tolerance to the latter and I really don't like the subdued haze that they leave you in the next day. I will switch to another Benzo as it's that or lie awake all night.

There are still lots of other things to try, but it's tough doing so many things and not making progress and really tough when I realize this has now affected 20 years of my life - my entire adult life.

This stirred some interest in me: http://www.icemanwimhof.com, but no cold water readily available here. I would have to have buckets of ice delivered daily lol, but it could be done.

I'm back on the forum now, so I'm of course in the middle of a huge flare brought on by some traveling and lack of sleep. About 72 hours of non-stop intense urge to urinate that dominates all my thoughts and for the first time in a long time kept me home from work this week. If the pattern continues, in a few days I will drop down to a more tolerable level of discomfort.

Keep me updated. I don't post here often unless I'm really in serious discomfort as I like to get my program going and do it and not dwell on all the details and alternatives here. But of course it's great that we can share experiences and hopefully one day, our success stories!

[webslave]

I'm back on the forum now, so I'm of course in the middle of a huge flare brought on by some traveling and lack of sleep.

Hate to say this, but for some of us only a complete lifestyle change, one which allows us to relax at a deep level, will allow a cure. While most can continue with stressful jobs and still get better, some of us, and I include myself in this, need to chillax, permanently, to get better.

This may or may not apply to you, CMT.

[CMT23]

Thanks Webslave. When this started 20 years ago, I did a few things:

1. Stopped all ejaculation for about 3 months
2. Took a brief course of antibiotics and antidepressants (maybe a month), got a cystoscopy and was told I was fine.
3. In month three I went to Hawaii for the Summer. I remember being thrilled to be there and even though there was some stress, my general attitude was very positive and happy. During that time my symptoms disappeared even after ejaculation resumed.

A couple months later back in my 'real life' and out of nowhere, the sensation came back like flipping a switch.

So I definitely believe there is a psychological aspect and that reducing stress is key. I also don't know if I refrained from ejaculation for many months again if the muscles would 'heal themselves'. I think I've made it a couple weeks at most in the past 20 years. It started during ejaculation and is always wore after ejaculation so very clearly the muscles responsible for ejaculation play a role.

I already remove myself from so many social situations and opportunities to travel, but I know I still carry around a lot of stress and anxiety, which I have to work on.

The last two days have been slightly better. Uncomfortable, but not all encompassing.

I was getting desperate and went to a doc here who has me on:

Night:
Remeron 15mg
Nortriptyline 50mg
Clonazepam 1mg (add .5mg if wake up in middle of night)

During the day he asked me to stop all Benzos apart from .5mg Clonazepam and see how I go.

Too soon to say of course, but it's a drug combo I haven't tried before. The combination does help sleep. I'll report back in a couple weeks with notes on any change.

At the end of the day I probably need a complete lifestyle change and mental adjustment change. Easy to say - difficult to do, but I'm working on it.

[webslave]

At the end of the day I probably need a complete lifestyle change and mental adjustment change

True for many of the more intransigent, difficult cases. But as you say, very difficult to achieve (in my case, my dear wife was able to shoulder much of the bread-winning burden).