Banging my head against a wall....and totally had enough

[hgtdazza]

6 monhs ago I was finally talked into having a c/scope and a prostate massage by my doctor. The hospital told me it would be around a month before I had a follow up appointment but after 6 long suffering months I'm still waiting and I'am now told it could be at least another 2. Anyone who knows the British NHS will know exactly where I'm coming from. Since I had the s/scope and prostate massage I've had 3 different antibiotic courses and a hell a lot of suffering in between. I went today as they told me I could go private and pay to see the same specialist within 2 weeks. £110 but as far as I'm concerned well worth it. Me wife booked me into the wrong doctor by mistake and I had to then try to explain from the start what my symptoms once again to a lady who didn't speak very much English. How can people still say that prostatitis/pelvic floor tention doesn't lead to leg/back aching and pain? Anyway sorry to beat around the bush but I can honestly say I don't know where to turn and I've had enough. I've suffered from depression and ocd for many a year and to be honest I'd give myself a big pat on the back for the way I manage it. But the problems I get with my symptoms really are starting to push me over the edge. I find it very strange that after these 4 years I'm still not diagnosed or receiving any treatment at all. After coming out of the doctors today I just sat in my car and cried my eyes out. I'm no wimp but I totally agree with what a fellow poster says when he said that he wouldn't live with it for much longer. Every now and then I see and ostiopath as I have a heavy manual job and he's also a semi trained shrink. He was the first person that said to me that maybe a lot of my problems, he feels, are due to pelvic floor tention. Probably brought on by stress as I was growing as a child. Although I now mainly have my depression and ocd under control I really am started to realise how much it effects the body. Things that I suffer with that I didn't have a clue was related to my other problems I read on here does. Amazing to be honest when you can learn more from a web site that you can get from your health service. I'am starting to believe that I can treat myself better than the famous British NHS can. Sorry to bore everyone but its noce jus to open up to people that at least know where I'm coming from and can understand. Lastly I'd like to explain my syptoms so any advice is more than welcome..thanks for the ear
Back and leg aching/pain, sometimes really bad sometimes mild.
Pain that feels like a kidney infection, again sometimes very bad.
Bad memory loss when I feel like its at its worst, amazed me when I read the post about this!
Pain from my bladder. Even when I've been for a wee it still feels like my bladder is full and pressing on something that is giving me pain. also the same when I want a poo. I feel like I'm bursting to go but don't do a hell of a lot. I don't have pain when I wee though.
When I've had sex the bit in between my anus and my tests feels painfull. I think this is the pelvic floor muscle? Sometimes feels like I've rubbed sand paper over it and sometimes swollen.

A few things that helps me is not going to the toilet as much and drinking more water and holding it for longer. Making sure I try to relax more and not tesing my pelvic floor muscles/back etc. Warm baths help. Drinking less coffee especially in the morning when I'm at my worst. Massage and stretching really helps. as does exersise and keeping my weight down although I'm pretty average weight wise. Stress I feel as I feel any other people do is the main key. Any advice or words would be very welcome as I feel I'm coming to a point where I can only see one way out.

[MastCells]

Your symptoms (e.g., perineal pain and bladder pain) are common symptoms of CPPS. Considering your history of anxiety and OCD, you may benefit from physical therapy and paradoxical relaxation. Make sure to read as much of this forum's archives and https://ucpps.men as you can. They are the two best sources of information on chronic prostatitis / chronic pelvic pain syndrome available. I know you are frustrated (I've been there too.), but don't give up! Hang in there!

[Superhero]

Sorry you are having a hard time. Don't give up hope though. There is a way out.

Please read my post under "success stories" (It's called "A success story" by me, superhero.)

One thing that struck me about your post is that you have a manual job. Very curious. Because I also used to have a manual job....and I noticed a direct correlation between my pain and how hard I worked. Do you notice that your symptoms get any better on weekends or on vacations? Or on days where you're not on your feet all day?

One of the things I did to help in my recovery was to limit my manual labor. (luckily I'm self-employed and can dole out most of the physical stuff to my employees.) Is there a way for you to avoid regular, manual labor? Can you change positions at your job? If so, you may start to notice an improvement. In fact, I would almost bet on it. Being on your feet all day can be torture and can limit your ability to heal.

Also if you're not already, get into a vigorous exercise program. And stick to it. You need to loosen up your pelvic region. Also take hot baths every night. any accredited quercetin product might also help.

One of the best things I did was start going to the Chiropractor. I'm amazed at the improvement I have after each visit. A regular chiropractic appointment might put you in the right direction.

Good luck -- Tom

[CppsDad]

IF your problems are caused by trigger points and muscle tension in the pelvic muscles, then you are at the right place. Before reading further, know that if this is the case (likely for 85+% of abacterial prostatitis sufferers), then you CAN GET BETTER.

I would caution against a vigorous exercise program. If you have trigger points and shortened muscles, then exercise could exacerbate the symptoms, not make them better. I think a gentle walking program is the best to start with, increasing only as your tolerance for the strain on the muscles increase.

But the big issue here is your mental state. I had this for 3 years before finding the solution to my problems (ON MY OWN I might add - no help from doctors). I was lonely, depressed, and feeling ignored by the medical community. It is fully normal to be mad at the doctors and the medical community after 4 years. But at this point, that won't help you. In fact, the medical community is largely unaware of our condition, so why should we expect them to know how to diagnose it. It's not completely their fault (YET). In a few years time, however, I would expect every doctor worth his or her salt to know about pelvic muscle floor tension.

I suffer with anxiety too, and I was also diagnosed with IBS (which caused kidney type pains).

The thing I learned about muscle pain is that the referred pain (and perceived pain) can be in completely different areas than the source of the pain. Trigger points can refer pain all along the nerve lines.

Now on to your symptoms you mention:

Back and leg aching/pain: I get this too. This can be referred pain or just pain in those muscles themselves from tension.
Pain that feels like a kidney infection: Mentioned above, my IBS caused this (IBS can be exacerbated by stress)
Bad memory loss: When my anxiety is high, or my tension is high, I feel like my head is not all the way there. There may be other things at work here too so I don't have much to add.
Pain from my bladder: My abdominal muscles are a MAJOR source of my chronic prostatitis / chronic pelvic pain syndrome pain. Just pressing on them near the middle causes pain in the testicles and all the way back to the sphincter. It wasn't until I started working on these that my pain started to improve.
When I've had sex the bit in between my anus and my tests feels painful: This is the worst symptom of mine. In my case, part of this is caused by trigger points right in front of the sphincter that you can press on externally. I use a Theracane to do this work. My PT explained that no less than 6 different muscles come together right in front of the sphincter, so I work in front of it and all around the sphincter pretty hard.

You mention you have a spouse - she should be instrumental for you. She can do the trigger point therapy every day if need be. Just make sure to get a few PT sessions first so you can learn how it should feel. And bring her with after a few session so she can watch as well.

Keep your head up. Sounds like you've managed your pain so far. You can work your way out of this, and you've found the right place for support.

Mike

[scotsman]

....Drinking less coffee especially in the morning when I'm at my worst......

Small thing but try cutting out caffeine totally - there's lots of decaffeinated tea and coffee out there for the taste (though not the 'buzz' of course).

I had the same sort of success with my local GP as you did (i.e. antibiotics only) - but I was lucky enough to stumble across this forum 6 weeks into my symptoms and the moral lift was massive. I really feel for sufferers who go for years without any real hope - the frustration you feel must be horrendous.

Don't give up though - this forum is a great source of information. I know when I found it first I just read and read and read.

Where are you based in the UK? I know a good physio in Edinburgh that I'd recommend seeing for an assessment.

Richard.

[hgtdazza]

First of all many many thanks to all your replies. Yesterday I was angry and down. Today I'm just down. Funny though I'm an expert on managing stress. Sometimes though it only takes one small thing to push me over. Stress I know is a major problem. Years ago I learned to stop worrying about myself. I know that's a very sick thing to say but honestly true and I know it creates its own problems. I don't feel sorry for myself either and I feel sometimes its hard to talk to people about things like this as it sounds like you do. Then my anxiety moved on to my wife/daughter and mum when she was alive. Believe me I'm one of life's fighters but there are few times in my life when I am fed up of fighting. I.e. yesterday. Generally though I'm quiet laid back and I even get stick about it. People who don't know the child inside that's hurting like hell wouldn't know anything like this goes on in my head and I can pick a person that suffers from depression a mile away and I've been thanked by many for helping people who suffer.
Anyway now to the nitty gritty. Someone mentioned (sorry can't remember who said what) ibs and kidney aching/pain. I was told I had ibs a few years back by my doctor and by a shrink who helped treat my ocd. My pain was in the front below and either side of my belly button. Not too bad though in recent years now I've started to control my low feelings. Exercise helps. I go the gym about 4 times a week. I don't push myself to the limit. I do half an hour doing cv work and about the same doing weights. Again not too heavy. Then I sit in the spa/steam room and relax for an hour. Really helps and I use the gym to keep my ticker ticking, my weight down and to relax. I'm afraid I can't do too much about my work. I'm more or less standing in one spot and lifting heavy stuff all day. I feel my back, leg and pelvic floor muscles tightening all day and I have to mentally think to relax them. Something I feel I'm good at, but after years of doing this its going to be a while before I do it more naturally I feel. When I tense my buttocks I can feel the pressure it put inside my bum and to my prostate area. My pelic floor muscles get it both barrels. Can you imagine these actions made worse by stress. It helps when I stretch and have the odd walk around the factory.
Today I've had the pain in my bladder. Feels like I want a wee, although relieves it when I maybe drink half a pint of water and don't go so often. It feels like my bladder is about to go into spasm. Same really with my bum. One thing also that I forgot to mention was numbness in my big toes, outside of my thumbs and at the same time numbness in my pelvic floor area. I never really realised that these things were associated until recently reading a post on here.
Hopefully when I've finally seen the specialist, I'm going to ask my doctor to send me for some relaxation treatment and also so massage. Massage I feel helps a lot along with stretching.
Once again thanks for all your replies and any more very very welcome
Thanks
Daz

[Superhero]

Well I feel the need to respond to CppsDad. It's about vigorous exercise.

Many people with chronic prostatitis / chronic pelvic pain syndrome avoid vigorous exercise because they say it irritates their symptoms. My experience is that this irritation is only a temporary thing. And affter a couple of weeks of vigorous exercise under your belt, your pelvic muscles will have no choice but to start relaxing in a big way. The irritation soon goes away.

I stand here today 99.8 % pain free....and I built my recovery on regular daily vigorous exercise -- (along with regular chiropractic treatments, regular relaxation, and a discontinuation of my physically demanding job.)

It's not rocket science. The key is to relax your stomach/pelvic muscles. Walking around the block simply won't do this. You have to get your heart rate up for a good 30 mins per session.

It's like if you were to clinch your fist constantly for days, weeks, months on end. Once your FINALLY started shaking it and moving it OF COURSE it's going to hurt. It's only natural. Don't let a little pain scare you off from the greater good! And don't forget the Chiropractor. Exercise and chiropractic go hand in hand. I wouldn't be here cured today without each of these.

[CppsDad]

I have to disagree with you Superhero. In my case, vigorous exercise just made things worse. My pelvic muscles kept going into spasm and causing huge flare ups. I did this for months. I will grant that not EVERYBODY will have trouble with vigorous exercise, but it's still worth cautioning him since he already says that the heavy exercise he does at work causes him pain.

Daz, I mentioned I was diagnosed with IBS and that it caused Kidney-type pain. The pain was minor to moderate most of the time with perhaps a few severe bouts of pain. I was scanned for Kidney stones, Gall-stones, you name it. No one ever really diagnosed me. But after all these years I think it was just tension in the stomach region (in my case a precursor to the tension in the pelvic region).

I don't know much about numbness in any extremities, so I can't say if that's related or not. I'll leave others to comment on it.

And make sure to get your wife involved in the treatment. I know my wife was much happier being able to help me rather than watch me suffer. She relished getting to be part of my recovery. Whether it be helping you stretch, or doing internal or external PT work, she can make a difference (and she's probably free!).

Mike

[alprost]

Mike is spot on - it is an individual thing. Superhero - it's great that you have recovered, but exercise can be a major trigger for some people, and it's nothing to do with not wanting to push through the pain (I was an international level sportsman and before getting this and was more than aquainted with the pain barrier!!!).

If you have a shortened pelvic floor with trigger points, along with hypersensitivity of your urinary tract, any exercise may flare your symtoms - you just have to suck it and see. If you can exercise, great - It's great for pain management, depression, anxiety and general health. If it flares up your symptoms, you need to find something which dosen't or avoid vigorous exercise.

As for 'relaxing your pelic floor' during exercise, you need to avoid tensing it overly, but it is impossible to 'relax' it - it is integral to pelvic stability, and is among the the first muscle groups group to be activated when you do any movement in any direction.

[Superhero]

Well to continue this discussion about vigorous exercise, I have to say that I experienced the same thing. Vigorous exercise by itself for me also caused flair ups. For many weeks, infact. However, it was not until I started getting chiropractic adjustments along WITH vigorous exercise that I started seeing improvent. And improvement came rapidly. I don't have the time or ability to emphasize just how valuable the chiropractor was to my improvement. Without it, my exercise would have been fruitless....as would have been my recovery effort. On the contrary, chirpractic alone is not enough to do the trick. You (I) have to COMBINE those efforts for it to do any good. (By the way, a spinal imbalance MAY have something to do with why you are in this situation in the first place.)

I know all this may not make any sense, and in all honesty I don't even know why chiropractic/hard exercise works for me. I'm certainly not one to fall for quackery or weird magic potions. But it works. And I'd be dead in the water without them both. Anytime I have a small twinge or flare-up, I head straight to the chiropractor and then step up my exercises.

A good program if just starting out would be:

1. Chiropractic adjustment once per week (until pain greatly diminishes.)
2. Run/jog/windsprints every other day
3. Lower stomach massage nightly
4. Hot bath nightly
5. Reduce your sex/masturbation to once per week or less
6. stretching program (mildly optional for me)

I've been through hell and back...and this is my protocol for quick healing. If I were to start from ground zero with excruciating pain, I could cut the pain in HALF in less than two weeks with this protocol. I stand here today absolutely pain-free. Take it for what its worth. Good luck, Tom

[CppsDad]

I'm guessing your chiropracter was affecting muscles that were involved in your chronic prostatitis / chronic pelvic pain syndrome pain. I see no reason to doubt the protocol you describe. But since we all have different combinations of sore muscles, with different levels of severity in each, and different locations for our trigger points, it's doubtful any one highly specific protocol will work for any large group of people. I'm glad you found something that works for you though! Hopefully SOMEONE will benefit from your experience and get better with it too.

Mike