Positive stuff mainly

[GP2]

I have suffered from chronic prostatitis / chronic pelvic pain syndrome for nearly a year now. My symptoms haven't followed a typical path, well at least not the same as many posts I've read. Last May I felt a strong tingling in my perineum which did not subside for 2 months (doc advised ibuprofen / antibiotics). Because I've always felt an element of groin / testicle pain I always dreaded cancer in that region or something equally scary. Basically I scared myself into this condition. Anyway I felt better in July & august simply because I decided that it couldn't be cancer from the symptoms and that was enough to relieve my anxiety. However, I had a second attack in September / October which prompted me to go to the urologist privately. Incidentally the pain before the appointment was the worst I'd known it for 5 days or so. The appointment relieved my concerns - non-bacterial prostatitis was the diagnosis. I was pain free completely for 2 months then December & lots of partying & burning the candle both ends & it came back & guess what - I panicked! Pain was on & off for that month but by now anxiety symptoms had become more prevalent. When I had anxiety symptoms (Generalized Anxiety Disorder (GAD) - all the works) chronic prostatitis / chronic pelvic pain syndrome went and for weeks at a time. Same with IBS which I've had for years!

January I had my second appointment with the urologist (what a flash git) who told me to "relax or it could turn into bacterial prostatitis and get worse". Thanks mate! Well I got home & that was my worst patch to date - a week of no hope, not eating food which is rare for me & all the thoughts we all have - "life over at 27!!"

Anyway I found this site by desperately typing in "prostatitis help" & I felt like there was hope, I wasn't done for! That was enough to see me go relatively pain free for 2 months (see the pattern here)! So is started on the stretches / relaxation (I've done meditation a lot in the past) & realized that I tensed those muscles a lot & I was ok until Mid March when thoughts like "what if this thing comes back?" brought on another attack. Now I'm here 2 months later up & down with the pain but I've also learnt so much & I believe I have valuable info for you guys-

- Slow down - I used to walk, talk, work, do everything quickly. Now if I slow down especially during a flair my pain is minimal. It seems weird this for me but it works. I always thought taking it easy was being lazy!

- Keep a diary - so valuable. I learnt this from my days with panic attacks. It keeps everything in perspective & reminds you that a day of pain was actually an hour of bad pain that's all!

- Accept & let the pain pass - this has worked at work when sitting down in the mornings was always the worst pain. Now most days at work I'm pain free from lunch time onwards (i also read that pelvic pain can be more prevalent in the mornings due to muscle inactivity all night when sleeping and before - back pain is common early morning)

- Learn from each setback - my best days have come out of moments of despair. Learn from every experience.

- Read positive literature - I read about people who have come through a lot of bad things in their life. This encourages me. I also realize that id rather have this than lose someone I love, have Aids or cancer or something awful like that.

- Make the most of every moment - this is harder if you are in constant pain I know. But if there's one thing that this condition has taught me is that "nothing really matters". I used to go home chewing over something someone had said to me that I assumed was mean or wrong. I would lie awake worrying over a stupid argument with someone. I used to always get the last word, I was way too proud not easily admitting mistakes, I could never be seen to fail in any part of my life, I didn't appreciate stopping in with a good book enjoying the quieter moments in life. Not now! (admittedly I have been on this journey of self discovery for years now)

But I do have a few questions -

How much do you guys try & understand the pain? It can baffle me at times i.e. no pain all day sitting at work then a heavy ache in the evening even after a bath & stretches? Some days I've been majorly stressed and had no pain too!

Why can I get a flair that is major painful for an hour for no obvious reason in an otherwise pain-free day?

Seen as anxiety about the condition has always brought on pain is it enough for me to do to solve my anxiety issues? I have never had more than a month of continuous pain although I've suffered for a year overall so I don't know if I should try trigger point release. I am being patient & trying not too worry about the condition but sometimes I wonder if that's enough. I have resolved my anxiety at least four times the last year & seen pain go within days.

should I check out sarno or is it normal for pain to stop & my fear to go only for back pain / ibs to come on hours later literally?

And finally - can most guys say that after reading AHIP & accepting their condition that their worst days are behind them? I believe that when we talk about the progression of chronic prostatitis / chronic pelvic pain syndrome we should remember that it will only get worse if the pain-anxiety-tension cycle is allowed to take hold. Or am I wrong?

Sorry for the long post & please call me GREG!

P.s - if it looks like I havent been in a lot of pain from my post I HAVE - I just dont like to dwell on the pain. I've also had all the desperate emotions everyone else has & I still do!

[DavidinLA]

January I had my second appointment with the urologist (what a flash git) who told me to "relax or it could turn into bacterial prostatitis and get worse".

Turn into bacterial prostatitis? That's a first for me. I suppose if it were true, we'd all have infections throughout our bodies by now.

How much do you guys try & understand the pain? It can baffle me at times i.e. no pain all day sitting at work then a heavy ache in the evening even after a bath & stretches? Some days I've been majorly stressed and had no pain too!

It's still very unpredictable for me. Then again, I have not been keeping a diary as you suggest. However, I do find that I tend to know within ten minutes of waking in the morning whether it's going to be a good or bad day - so it may be something about the way I sleep.

should I check out sarno or is it normal for pain to stop & my fear to go only for back pain / ibs to come on hours later literally?

I have note finished Sarno's bood but I know he does mention prostatitis in it.

I believe that when we talk about the progression of chronic prostatitis / chronic pelvic pain syndrome we should remember that it will only get worse if the pain-anxiety-tension cycle is allowed to take hold. Or am I wrong?

I have not made a serious effort to control my anxiety/tension, yet my symptoms are better than they were two years ago when this started. That's just my expirience, however.

Great post, Greg! You seem to know a lot already. Hope you progress more really soon!

[scotsman]

Hi Greg - welcome to the forum and thanks for the post and recommendations.

How much do you guys try & understand the pain? It can baffle me at times i.e. no pain all day sitting at work then a heavy ache in the evening even after a bath & stretches? Some days I've been majorly stressed and had no pain too!

I'm probably less lucky in one manner in that my pain is pretty constant but luckier on the other hand as I've got a good understanding of what causes my pain to flare and what actions help reduce my symptoms. I think it's healthy/good to try and understand what moderates the symptoms - as for me that helps me feel more in control of this condition and less a victim of it.

Why can I get a flair that is major painful for an hour for no obvious reason in an otherwise pain-free day?

Could be either a physical trigger or an emotional one that causes a muscle to spasm or triggerpoint to flare. The problem with the pelvic floor is that it's packed with different muscles and nerves that link all over the place and pain can be referred from anywhere. There's a lot to 'go wrong' or can signal that something has gone wrong.

Seen as anxiety about the condition has always brought on pain is it enough for me to do to solve my anxiety issues? I have never had more than a month of continuous pain although I've suffered for a year overall so I don't know if I should try trigger point release. I am being patient & trying not too worry about the condition but sometimes I wonder if that's enough. I have resolved my anxiety at least four times the last year & seen pain go within days.

My advice would be to continue with the stretching and if possible find a physio who can assess you. It would be a shame if you did have some triggerpoints that if untreated might get more dysfunctional over time and subsequently take longer to resolve.

should I check out sarno or is it normal for pain to stop & my fear to go only for back pain / ibs to come on hours later literally?

I've not read his books/work so can't comment. However, I did read 'Loving what is' by Byrion Katie last month and I've been very surprised at the impact that book has had on the way I look at things (and I'm a cynical and pragmatic Scot!).

And finally - can most guys say that after reading AHIP & accepting their condition that their worst days are behind them? I believe that when we talk about the progression of chronic prostatitis / chronic pelvic pain syndrome we should remember that it will only get worse if the pain-anxiety-tension cycle is allowed to take hold. Or am I wrong?

I don't believe ceasing the anxiety cycle will by itself resolve the physical symptoms. It is certainly a critical and key component to recovering and stopping the 'spread' but if you have chronically shortened muscles then they will probably need addressing with physical manipulation. In 'A HEADACHE IN THE PELVIS' I think it uses the analogy of clenching your fist, when say you've clenched it for a month and try and open it there would be pain and discomfort. Now, whilst breaking the pain-anxiety-tension cycle might stop you from clenching your fist even tighter it might not be enough for it to release and having the fist clenched at the same level might itself increase the pain and take longer to rehabilitate the fist back to being open and relaxed. So, a long winded way of underlining that for most of us the recovering has two equal elements - relaxation and physio.

Richard.

[GP2]

Thanks guys - I appreciate your comments.

Richard - I've read your post keenly. Didn't you do trigger point release fairly quickly into your condition? You say your pain is more constant - is that still the case even after trigger point release?

I will order that book too. I have read the reviews.

David - could you tell me how you have helped yourself in the last 2 years? Are you an anxious person generally or is your anxiety solely about the condition?

Thanks

[scotsman]

Didn't you do trigger point release fairly quickly into your condition? You say your pain is more constant - is that still the case even after trigger point release?

Yes, I probabaly started doing triggerpoint treatment around month 4 - and continued for over 50 sessions with my physio and do it myself now. I had so many triggerpoints though (internal and external) that it took a while to resolve them and numerous came back between sessions - this is the main issue I have left, triggerpoints and an area of chronically shorted muscle both around my sphincter that never seem to go away. Each day I'm treating it, stretching the muscles and treating the triggerpoints but they keep coming back. This is where the relaxation I do will hopefully help prevent the reoccurence from happening. It can take a long time though.

Note however though that in percentage terms of treated area I've probably resolved the problems in 80% of the areas (my whole pelvis was 'wrong' at one point), just this last 20% is taking a long time. I do feel I'm making progress but I have to look at the improvement in the scale of months of past time and not just after daily sessions.

The pain is constant from chronically shortened muscles and triggerpoints that are reforming, triggerpoints that are still there or from areas that have been treated as you can get an increase in pain following physio - and I'm doing physio every night. However, if I leave it for a few days (to let the area 'recover') then the dysfunction returns more, the muscles shorten and the triggerpoints develop further. It's a vicious circle and, for me, something I have to keep on top off.

I'm making progress though and have managed to reduce my pain medication from 250mg a day to only 50mg in the morning.

Richard.

[GP2]

Thanks for your replies Richard

What do you feel made your pelvis get so bad? How bad was your pain when it first hit?

Soory about all the questions!

P.s - Scotland is great for walking I hear. I love hiking. Mate is moving to Aberdeen soon so I'll visit1

[scotsman]

Check the 'My Progress to date' link in my signature for my story over the last few years. I'm due to update it soon.

Yes, got to say I'm a bit partial to Scotland - and even managed to entice my wife up from her parents home in Devon.

Richard.

[DavidinLA]

David - could you tell me how you have helped yourself in the last 2 years? Are you an anxious person generally or is your anxiety solely about the condition?

I have always been a high-strung/anxious person, for as long as I can remember. As you would expect, chronic prostatitis / chronic pelvic pain syndrome only made my anxiety 10 times as bad. Even small tasks seemed like major challanges on my worst days. However, today I handle it better than I used to, probably because I recognize that the flares are only temporary and don't panic as much.

I'm currently resuming the protocols suggested by my chronic prostatitis / chronic pelvic pain syndrome specialist and plan on seeing him in a couple of months. I'm taking Quercetin and get adequet sleep (that's always been a problem for me). I also take a Klonopin on bad days. This weekend, I plan to start the stretches recomended on this site and in AHIP. I also want to start practicing deep relaxation and meditation. If you or anyone out there can recomend some good books on those subjects, I'm all ears.

[scotsman]

I also want to start practicing deep relaxation and meditation. If you or anyone out there can recomend some good books on those subjects, I'm all ears.

Recommend this one: The Relaxation & Stress Reduction Workbook by Martha Davis.

Richard.

[GP2]

David -

I have practiced meditation for years on & off & it certainly prevented my anxiety / panic attacks (which I havent suffered from for 3 years). Ironicaly enough when I came down with chronic prostatitis / chronic pelvic pain syndrome I felt more aware of myself and balanced than I ever had - bummer hey! I think the combibation of 2 years of a very stormy relationship with a girl I worked with (differnt cultures / both scorpios - bad combo!) & the previous years of being in a state of anxiety cause chronic prostatitis / chronic pelvic pain syndrome to come on. I'm lucky because I recognized years ago that I need to cut down on stress so it hasnt been as much as a shock to the system the adaptions one requires to make in response to CPPS. Plus I dont have a stressful job really although I sit all day. Maybe all this is why my chronic prostatitis / chronic pelvic pain syndrome has never really taken hold as bad as many guys have had it- I DO BELIEVE that I can keep it at bay. I'm a very firm believer in what you believe is your reality!

In regards to relaxation take scotsman's advice as hes one of the good guys. All I'll say is -

Make sure you are relaxed before you practice deep breathing / relaxation. If my mind is cluttered I listen to a relaxation CD (pan pipe moods or just relaxing songs) I find then that I can focus on the music and not the clutter!

Sit in the dark & avoid all stimulation (turn cell/mobile phone off, practice before bed when the house is quieter & people are going to sleep)

Be patient - if in pain especially. I have resolved some of my worst pain moments by sitting and relaxing / breathing deeply for at least half an hour before the pain subsides significantly.

I learnt this technique somewhere- always breath through your nose, always take a deep breath though your stomach, hold your breath after youve breathed in for around 8 seconds & slowly exhale. IT WORKS!

If you find your mind wanders to random daily thughts / stresses gently say to yoursel "focus" or "my mind is clear of thoughts". Plus I focus on nature scenes imaging lying in the grass on summers day or my favourite - led in a little wooden boat on a river - it actually makes me smile1

Other tip - read some of DEEPAK CHOPRA'S books

Take care mate

[DavidinLA]

SCOTTSMAN -- Thanks for the book recomendation. The sample pages on amazon.com were very impressive and it looks like it covers a lot. I've already ordered it and look forward to receiving it sometime next week.

GP2 -- Thanks for the great advice. I've saved your words to my hard drive and will review them the next time I have a flare up.

Stay well.

[GP2]

Glad to be of help Dave. Good luck. Keep me posted - contact me privately it you like. I've had a good weekend for many reasons on the pelvi pain front so things stilll looking up.

Cheers

Greg

[LightningTree]

GP2,

For me, there is correlation between sitting all day and then pain I will develop that evening or the next day. (not any more, mind you.)

Unfortunately, do to the time delay between the sitting and the resulting "tennis elbow of the butt" one may not notice the correlation without some careful, long term experimentation.

My twin brother and I both have this, so some comparative experiments convinced us that avoiding sitting was useful in the long run.

[GP2]

Thanks lightening tree -

i follow your posts keenly & I think we fall into a similar category (i.e. the anxiety / stress causes as primary)

Please note my recent post. Like yourself my brother may (or may not) have this condion.

Greg

[scotsman]

i follow your posts keenly & I think we fall into a similar category (i.e. the anxiety / stress causes as primary...

To underline the impact stress can have I had an incident happen on Saturday there - when my 14 month old son started to choke on some food, which ended up with me holding him on his stomache/face down and thumping his back for ages before it cleared (thank goodness I'd been to classes on what to do). He's completely fine but it scared the shit out of me and my nervous system was shot for the rest of the day and guess what - major flare that night

Richard.