Thoughts on my condition, please help

[33981926]

Hi Tweezer,

I just read through your story. It seems like you have a good handle on things. Like you I have been dealing with this for a short (4 months) time. My main issue is constant penile burn. Sometimes my thighs and outer butt cheeks also burn (when I sit too long). Man when I first got this I thought I was going crazy! I got really depressed and lost 15 pounds. I have had all the typical urological exams with nothing found (no dead Wbc, no bacteria, my prostate is normal and doesn't hurt). I have been on 5 different antibiotics and they did nothing. An occasional 5 mg of Valium does break the pain cycle. I take it sparingly because I dont want my body to become tolerant. My pain tends to go away when I am laying down or up walking around. Even though I am pain everyday, some days the pain is a 2 all day long and some days it can get up to a 5-6. It sucks that sometimes there doesn't seem to be a pattern.

I have started doing the stretches from the HITP book every night. I think that I am going to start doing some internal stretching like you. Do you do that in the tub? I am also thinking about taking Elavil, as it seems to have helped some. This whole ordeal has turned my life upside down. I started pulling away from hanging with my friends. I try to stay positive but it hard. Nobody (except people on this forum) tends to understand what I am going through. It sucks even more because my wife and I are trying to have a baby. Any thoughts would be greatly appreciated. God Bless.

[tweezerr]

33981926:

What you are going through sounds similar to my situation. I'll give you my thoughts on what has worked for me and it might work for you. But keep in mind that everyone is different, so just try this out and see if it works for you. I'm going to tell you this stuff like its a matter of fact but its just my own opinion and experiences.

So I have basically experimented and took note of everything that gives me pain/flares and what relieves my pain. Like you, I got instant relief from Valium, walking and when I sleep. This is because during these times you naturally relax your pelvic muscles (the same way you relax when you pee). I started to do everything I could to keep my pelvic muscles relaxed. I would take short walks constantly, I wore a watch that vibrated every 5 min to remind me to relax/drop my pelvic floor, I would take naps, etc. I noticed that when I would start to feel pain I was unconscionably tensing my pelvic floor. I would keep a journal about all this stuff.

I experimented a LOT with Valium (and other benzodiazepines) and they eventually got the best of me, I could start to feel my mind become dependant on them. Be very careful with them. I would say a good rule of thumb is twice a month, tops. The problem with this drug is that when you use the drug to ease your pain and relax your pelvic floor you never learn to do it on your own. So even though it breaks your pain/tension cycle, it will always come back. The one benefit, is it shows you that you can be pain free, you just need to mimic what the drug is doing....which is relaxing your mind and body.

I don't do stretches or TP work. For me it just seems to aggravate everything and I don't feel like I've had this long enough that I need to manually work anything out....like if I've had this for years...again just my opinion.

My protocol is geared around 100% relaxation of the pelvic floor. This starts with your mind and ends in your pelvic muscles.

I also noticed that when I am truly happy, and this can even be while I'm eating my favorite food, I am pain free. Accepting this condition and being happy is IMO the #1 most important thing. Because when you're happy you are naturally relaxed and when you're not your tense...it's that simple.

Get back into hanging out with your friends. Being social is a vital part of happiness. So is diet, exercise, good sleep and relaxing/meditating/not thinking.

Does this condition suck?? Yes but there are MUCH worse things you could be going through.

A great book to read on learning acceptance is "A New Earth" by Eckhart Tolle.

Another book I just got is "Spontaneous Happiness" I've only skimmed it so I can't recommend it, but it was recommended to me by someone I trust,

[33981926]

Hi Tweezer,

Thanks for the quick reply. I agree with you when you say that accepting the condition is crucial. I think that is why I get so down on myself a lot because I haven't come to terms with it. I am constantly crying about it. It doesn't help that I also haven't gotten an "official" diagnosis from any doctor (GP, 2 uros). All they keep telling me is that it will eventually go away on its own. My uro want to do a cystoscopy to make sure there is nothing going on inside. I am kind of scared that it might make things worse. What do you think? I also have an appointment in a couple of weeks with a neurologist...but I am starting to think that that is going to be a waste of time.

I have also started being careful of how often I talk about my pain to my wife as I'm sure she doesn't constantly want to hear about it. She has been very supportive, but I can tell that she wants me to accept it for what it is and learn to cope with it. She is constantly telling me that this condition should not stop me from accomplishing all of our plans and always reminds me that it could be a lot worse. I suppose she is right. Any thoughts would be appreciated. God Bless.

[tweezerr]

Stop going to the docs, DO NOT GET A CYSTOSCOPY.

I'm gonna give you some tough love here, so take it for what its worth.....

Get a grip on yourself man, life could've dealt you much much much worse things. By crying about this and feeling sorry for yourself it only makes this worse. You say you want to heal and get better...I don't believe you....because if you did then you would do the #1 thing that is going to make you feel better...that is FORGETTING ABOUT THIS. Don't put a single thought of it in your head, NOT A SINGLE THOUGHT. The only thought I would accept is "am I tensing my pelvic muscles?" that's it.

If you can't do this than you will not get better.

Your wife is probably losing attraction for you big time because you can't man up and accept this. Stop talking about this condition to her, to yourself, to your million doctors, to people on this forum. STOP!!! Educate yourself on this condition and then take action. Period.

You're going to encounter other hurdles in your life once this passes and you will have to learn to deal with that too, use this experience to teach you how to deal with things in your life that might not be perfect. Damn man, you are going to die very soon...really soon... life is SO SHORT. Don't waste it because you've got some pain and discomfort. Learn to work around it, just the guys with no arms or legs, or blind and deaf, or no fingers. Take steps everyday to getting back to how you felt before this....read postive inspirational books, socialize, eat healthy, exercise, have positive thoughts not negative thoughts, smile, do fun things, etc

You should be able to read on this forum to get your "official diagnosis" The hardest conditions to diagnose are ones that are cause by stress and tension and anxiety...which is what this is. Its not like you can take a blood test for it or get a CT scan.

The only reason I am on here is because you asked for my help and advice.....and I would still be messed up if it wasn't for this site. The biggest thing to take from this site is comfort in knowing in what you have and the path and different things to try to help you to get better.

I get on this site like once a month now.

Good luck to you man...I truly do wish you the best with this. This will only make you stronger if you approach it from the right way.

PS. GET OFF THE VALIUM. "every other day" is way too much...getting off that stuff is another nightmare on its own....trust me I know and I wasn't even that deep into it. I couldn't sit still for like a month, literally.....the littlest thing would give me massive anxiety. I'm still a little messed up from it...but that's a good thing cause it just reinforces that I'll never use it for a long time and just like the chronic prostatitis / chronic pelvic pain syndrome I don't let it bother me one bit.

-Peace

[33981926]

Hi Tweezer,

I appreciate your feedback. Thanks for the tough love...I need it! I agree that a lot of how we deal with this condition has to do with our mindset. I have cut back on the valium; I actually only take it about once every couple of weeks if the pain gets really bad.. I will continue working on keeping my pelvis dropped throughout the day, taking hot baths, stretching, keeping my mind from going negative, relaxing as much as possible, and facing this with a bit more courage. God Bless.

[I will beat this]

TWEEZER I'm not sure you ever come on here anymore but I just wanted to say the post with the tough love is a great post and touched me at my core and I will try my hardest to take it to heart

[tweezerr]

@ I WILL BEAT THIS: I'm glad it helped and thanks for your remarks. Yeah, I don't get on this site hardly at all anymore, only because I'm at a point where I too need to work hard everyday to forget about this condition, accept this and continue to move on..Its a paradox because I want to give back all the value I got out of this site but it makes it harder to forget about it.... but I still check my thread every once in a while. I've learned about everything I need to know...which is a lot and I've spent hours upon hours on here.

Getting your mental health back in line is the #1 most important thing IMO, I think people need to understand just how much effort, time and hard work its going to take to get your mental health back on track and learn to accept this condition. Its not easy, it takes a lot of PROACTIVE effort every single day. The beauty is it will only make you stronger once you've gone through it.

I'll be the first to admit how much this condition can be a gut punch....no sex, no mb, no caffeine, no lifting weights, no alcohol, constant pain..in your manhood of all places, uncertainty on what to do to get better, etc. This condition will test your strength almost as much as getting your leg cut off in war....fortunately chronic prostatitis / chronic pelvic pain syndrome is curable.

This condition made me more depressed than I've ever been in my entire life. I was contemplating suicide all the time, I knew I would never do it but it was always something I fantasized about. It took me about a good 4 months of HARD daily work to pull me back to a healthy mind and I continue to work on it every day.

Good luck to you, let me know if I can do anything to help.

-Peace

[sys8]

Hi Tweezer. 1 year ago I got chronic prostatitis / chronic pelvic pain syndrome due to over masturbation too. But maybe my symptoms are worse. I have hard flaccid syndrome (hardflaccid.org). 3 month ago I began to use self treatment wand and see result at first week. But now I again have huge ED. Maybe you can advise me something? Nobody in my country knows about pelvic floor dysfunction. Today my USA visa was rejected. Nobody help me : (

[tweezerr]

sys8: I had a mild case of hard flaccid too. I would typically notice that most times when I had chronic prostatitis / chronic pelvic pain syndrome pain the hard flaccid would be there too. My hard flaccid would kind of come and go.

The best advice I think I could give to you is to put all your focus right now in stopping porn and masturbation. Definitely porn 100% completely gone, IMO this causes an over stimulation of the nervous system which directly targets your pelvis. Stopping the addictive habit of porn and masturbation was the hardest thing I've ever challenged myself to do in my life. AND it was the #1 contributing factor to my CPPS.

In order to stop porn and masturbation I had to literally drop all other priorities in my life and focus on this 24/7, 3-4 hours of reading and writing about my addiction every single day. The reason I'm telling you this is so you understand that stopping porn and masturbation isn't something to take lightly.

But then again maybe its not an addictive problem for you....but from what I've seen almost all guys are hooked on porn/masturbation to some degree and stopping for most is difficult.

Currently I masturbate about 2-3 times per week. I look at ZERO porn. I had to stop the masturbation until I got the porn under control because the two were linked together in my head so much. Eventually I brought masturbation back to 2-3 times per week but even now every time I masturbate I get massive craves for porn.

Good luck man!

[charlie222]

Hey Tweezer I just read thru your whole thread. Seems your story is very similar to mine. If you have a chance please read my story! For me I definitely have an abraded, irritated, swollen prostate and I don't know how to reduce the swelling. My symptoms also are waking up at nite 2-3 times sometimes to go pee. I also wake up very irritated and in pain because I always end up on my stomach and it gets all constricted and pressured and I get woken up only to void a tiny bit (but feel relief) and then I can sleep again.

I tried abstaining for 1 month, I've cut out porn and masturbation all together. I ejaculate with my gf once or twice a week now. But I think all the damage was already done, I think my nerve endings are shot in my prostate area.

I wonder the guy who said that the nerve endings take up to a year to heal, and the correct massages are needed. But which massages is he talking about? I am so desperate to do everything that I can now at this point. I can't take it anymore. I'm severely depressed. Its been about 11 months now

[sys8]

Tweezer, could you describe how to do right deep internal massage ?
Thanks

[tweezerr]

@ Charlie222: I'm not an expert on this by any means. I feel like everyones' chronic prostatitis / chronic pelvic pain syndrome is a little different and some need different things to help them get better.

Having said that for me the 3 main things that helped me get better are:

1. Regulating your ejaculation. This means zero porn. Ejaculating every couple days, preferably with a partner and as relaxed as possible without stressing yourself out about it. This sounds easy on paper but this for me was SO hard to do. Lets face it we were designed to do 2 things survive and replicate, which means your hard-wired to want to have as much ejaculations as possible. Writing in a journal everyday really helped me overcome this one.
2. FULLY ACCEPTING THIS CONDITION. You say you're depressed Charlie, well that in itself caused me severe pain. It's the same thing when I get a headache, if I focus on the headache and how much it sucks it doesn't go away but if I accept it and trust that I will get better and move on with my day it magically just goes away. BUT this isn't some tactic, I don't accept the discomfort because I want it to go away, I truly don't give a shit about the discomfort. There are lots of ways to do this. Read some Eckhardt Tolle. By accepting this condition and the discomfort that goes along with it, you will move on with your life, get back to doing the things you use to do that kept you happy. I became SUPER depressed throughout this whole thing, to the point of suicidal thoughts every single day. Crying all the time. In order to pull myself out of it I had to take MASSIVE ACTION. I worked on getting over my depression for about 2 months before I started making headway. This was SO huge in my recovery though.
3. Relaxing your pelvic floor all day long. For me I was tensing my pelvic floor because I was depressed and fully tension. Once I became happy again I stopped needing to do this, I now am naturally relaxed in my pelvic area.

@ Syss8: I never really did much internal massage and definitely don't have enough experience to give any advice. I would ask some others on here that do more internal work. That's not to say its not important in recovery, I just never got into it. I think maybe for me since my condition was so new, less than 6 months I didn't have to manually release the TP. In fact I had massive fasciculations for about 3 months, every single day, almost like once I started to relax my pelvic muscles the TP's started to release on there own. Not sure if this is accurate but that's what it felt like.

Good luck!

[charlie222]

Thanks tweezerr,

I think in cases like yours and mine, the whole abstinence thing should kind of be looked at differently than most other cases. I think in my case abstaining will be beneficial.

Did you end up abstaining for any significant period of time?

[Sullivot]

This is my first time here in months. Interesting insights about the condition, Tweezer. Several ironic paradoxes for me. One, is trying to focus on relaxing the pelvic muscles, while at the same time trying to forget about the discomfort. Another is that ejaculations at least 2-3 times a week are beneficial, but the condition has zapped me of sex drive and the desire for social interaction that often leads to it. You are right, isolation only adds to the stress that is a major part of CPPS; social interaction is important. As is getting your @ss up off the couch/bed and moving, whether it be stretching, walking, or whatever, even though the symptoms make doing those things difficult. I feel most of my symptoms can be traced back to general stress (I take half a Xanax as needed, but probably should be on it daily; Buspar is worthless). Relaxing the mind is paramount, as is positive thinking. Negativism breeds stress, and vice versa, which forms a vicious cycle. My scatterbrain ADD symptoms (the meds for which aggravate my CPPS, stress and frequent urination symptoms), make implementing lifestyle changes all the more difficult, and is perhaps the greatest irony for me.. But you're right, if you let this condition beat you, it will.

I've had bad relapses this week, the worst in months. Time to re-read Carld's starter pack:)

[Mike Kavo]

I do not think a lot about me matches your case and I can only answer your questions like it has been for me. So keep that in mind please.

Most "younger" less disciplined guys come back to this eventually by forgetting and living bad again - like me. As we speak I have zero pain or symptoms (not that this will last forever). Had a huge flare in Jan-Feb, really bad worst since I first got this in 2001/2. So yep coming and going with this is not abnormal and time frames can be in years. Might not be 100% per se every day but once you hit 85%-100% each day and no lower it really does not bother you.

My recent flare was hugely calmed with PT/Relaxation/Diet/Walking/very light weights. I don't like cardio — it flares me up but I do a great deal of walking when I can. I take no meds/supplements. NOTHING chemistry wise helps me. I only take Tramadol 1-2, no more, if I get a bad spasm (I get these occasionally) and if I stretch and walk they drop out by midday these days. NSAIDS do nothing for me; I can't use them. Although Voltarol Gel rub down post stretching (pelvic area minus sensitive bits) helps - weird that.

Yeah suicidal thoughts happens to most with this. My advice think of your flare as a wave and let it roll over you as the wax and wane means it is kinda dumb to go topping yourself when the next few days could be pain free. Let flares roll over you and enjoy the good days.

I don't think any of me applies to you....

You gotta bin that porn to that level, if not already done, and never go back to it. I guess your problem is it is more difficult to ejac now as you have de-sensitised yourself so much. You need to fix that by using only soft static images and your partner and "nothing" else and being dedicated to avoiding porn (get it blocked from your computer). It is not normal you know...although these days you're not alone by a long way in this habit.

You don't sound too CPPS-like really to me yet. I think webslave is correct — calm down and change lifestyle; a few months later you should be better.

How many times to ejac...less for sure than you said you did but at your age won't work too little times a week you will never make it porn or not. You will make yourself worse by stopping for large periods as the tension will build up too much at your age and drive you mad. I sooooo want to be 60, Socrates-style and say to young guys it is over with now screw you and your sex drive lol! My idea is every day or other day quick, calm, no grabbing and relaxed, only before sleep. I would not go more than 2 days without doing it usually, as at my age pelvic pain or not won't work. In a window of about 2 hours before sleep only I will do it. That just seems to totally remove post ejac pain for me and hence next days pain. Guess it is linked to relaxation in sleep. You could try my way doubt it will hurt you to try it.

I am not not a doc and I do advise you run this past a doc if not done so already.

Good luck you will beat this!