Question about how often you think about CPPS

[9999maverick88]

Hello - I have been suffering from symptoms related to chronic prostatitis / chronic pelvic pain syndrome since I was about 16. I am now 21. I also suffered from symptoms of what appeared to be chronic epididymitis since I was 13, which abated at bout age 16, but devolved into general CPPS. I believe that I originally contracted some kind of urinary infection, of which I did not inform doctors until years later (BAD decision - I probably could have taken a course of antibiotics and been done with it then).

Anyways, I notice that my MIND thinks about chronic prostatitis / chronic pelvic pain syndrome and the pain a lot - like, my mind reminds me of the pain/tightness in the perineum/prostate area and then it starts to hurt. If, for example, I am distracted while watching a movie, the pain diminishes quite a bit. I'm wondering if anyone else thinks about this quite as often as I do. I feel like I can't control it, my mind continually reminds me of it minute by minute. If you went through this, do you happen to have any suggestions?

I think this may have become quite psychological, which is probably related to the fact that most of my life I've been suffering from these symptoms, and I find it very difficult to remember what it was like to feel normal.

The worse time for this is at night, when I'm trying to fall asleep. I have probably averaged, in the past 9 years, to take 3-4 hours a night to fall asleep. This is no joke. Literally, every night, I lie there for 3-4 hours, whether it's because of the pain, or just the fact that I can't sleep due to thoughts continually streaming through my mind, I can not sleep. I am very exhausted from this ordeal as you can probably relate.

I have been reading 'a headache in the pelvis' and have been attempting to relax, although I find when I relax, I can only do so for a matter of seconds before the 'reminder that there's a problem in your pelvis' starts entering my mind - other than that, I can block everything out. What sort of techniques can I use to 'JUST RELAX' - LET GO of effort and not think of ANYTHING? Does anyone have any suggestions as to what works for them?

Thanks in advance!

[webslave]

Quick suggestion: try a short course of Xanax, a week or two, and combine with a relaxation CD. Report what happens.

[scotcan]

maverick,

I'm just new to the concept of chronic prostatitis / chronic pelvic pain syndrome and stress being the main cause of all the syptoms, and I have yet to receive my copy of HITP (On order). I have been trying to conciously relax my muscles and think about positive things. I find slow deep breathing, in through the nose and slowly out through the mouth helps me to relax. If I start to think about anything depressing, then I try to think about what I'd do if I won lots of money on the lottery - In other words I daydream!

I have also been taking a Tai Chi/yoga/stretching class, which ends with 10/15 minutes of relaxation. I have found that I am extremely relaxed after this and feel so much better! I also find it relaxing to lie in bed, in darkness, and play some soothing music that you like. Turn the volume down in case you fall asleep and make sure there are no noisy, loud track after it. My favourite is Shine on you Crazy Diamond, by Pink Floyd - It lasts for about 20 minutes and is very soothing

Most of all I think, just try to learn to enjoy your life again - That's what I'm trying to do

[BrettP]

I think about this every minute of every day. Mornings are the best. That is unti I ( maybe) take a dump. Then it all starts. Overall though. I can sleep no problem. It's the best time as I can finally close my eyes and space out. Try imagining a relaxing scenario in your head at night. Like floating in space or something that's what helps me.

[gmccormack]

Maverick,

In terms of sleeping, I had terrible insomnia after I came home from military academy, my schedule was so whacked that I could not sleep, period. It was so bad that I became delusional for short periods of time.
I was eventually prescribed some old fashioned anesthesia (liquid) which knocked me out completely for 6 hours and that broke the cycle. From then on I used Lunesta for 3 months. I think insomnia or difficulty sleeping can be alleviated by breaking the cycle and giving you confidence. When I was going through this I dreaded going to bed, I hated the bed. But once I had confidence that I could sleep the anxiety left and things got back to normal. I am experiencing the same feeling dealing with chronic prostatitis / chronic pelvic pain syndrome now, as the terrible pain cycle has been reduced my anxiety is diminishing.

I would even try a 50mg of Elavil, I was on that briefly for chronic prostatitis / chronic pelvic pain syndrome and it definitely made me extremely drowsy.

[neue01]

Pink Floyd is an answer to a lot of things in life.

[cam_05]

The overactive mind thing I think is quite common amonst a lot of sufferers. Persistence is the key to relaxation. You won't get there straight away. The music suggestion is good also. The key is not necessarily to think about nothing, but to not have your mind jumping from one thing to another. It's easier to focus on something rather than nothing, and perhaps a little ambitious to think we can after years of an overactive mind just switch that off.

At the moment I'm trying visualisation techniques to try and re train my mind into thinking a relaxed pelvic floor is normal. That is what I am trying to devote my attention towards during my relaxation. That may also be helpful for you, because every time you think of your pelvic area at the moment it's a negative thought. A lot of other people, as well as HITP say that focusing on our breath is a good thing to devote your attention towards too.

Also Try to cut out uppers like caffeine and sugars also later in the evening or totally if you can, and generally look at what you should do to assist you to go to sleep in the evening, get off the computer, don't watch tv etcetera. My personal opinion is that you should try natural techniques before you look to medication, however thats a personal choice for you to make. In saying that there seems to be a general consensus that Elavil is good, which i've just started taking 10mg of, i don't think it does a thing for sleep (at least at that dosage) but i feel a little more relaxed in the body. I've tried a number of different drugs that are meant to help you sleep at night, however if i go to bed with an overactive mind, I wake up as soon as the effects start wearing off, or my body is drowsy but my mind is still active. Whenever i do a good 20-30 min relaxation before bed, it is some of the best sleep I've ever had. I also find I am less likely to get up in the middle of the night, or when i do, my bladder is much fuller.

Good luck and don't give up. don't get more stressed when your mind wanders after 15 seconds of relaxation, that'll happen, just accept it and move on.

[garyholc]

Seems to be a lot of military and ex military personnel who are suffering from this - again I guess this points towards stress....

[gmccormack]

Gary,

That's true, I went to a private military academy for college although I didn't enlist, many of my friends did and went to the Middle East. Your comment hits home because many of them came home with very similar symptoms as CPPS, there is a slang word for it that I can't remember but the protocol is doxy and other antibiotic concoctions. Now it could be assumed that it's an STD but I know some that suffered for 6 months or so from it. I wonder now if what they had was CPPS???

[pminturn]

If you want to go for a more natural route to promote better sleep, I would suggest Melatonin. It is a naturally occuring hormone that promotes a healthy sleep cycle.

[garyholc]

CPPS isn't an STD, though some STD's may mimic similar symptoms. I know when I came down with this I had to have all the full range of STD tests done just to rule every possibility out.

[9999maverick88]

To the individual who recommended melatonin: I wouldn't recommend taking that unless you've done a lot of research. I'm studying biology and I remember reading that it's a relatively new treatment option and that when they were testing it on rats, it caused them to become sterile. So, I don't think I would give that a try.

[webslave]

Hmmm. The latest studies on melatonin and semen in mammals all point to positive effects.
http://pubmed.ncbi.nlm.nih.gov/18817966
http://pubmed.ncbi.nlm.nih.gov/18954380
http://pubmed.ncbi.nlm.nih.gov/11555372

Care to back up your comment with proof of some sort?

[9999maverick88]

I don't know, it's written in my biology textbook :) Of course, maybe something has changed since the last edition was published, although it's a relatively new book.