Hello, Strobers here

[mbaker]

I
What's weird is that I don't really feel that stressed even though inside, way deep maybe at the cellular level, I'm going a mile a minute. That's the problem with really deep rooted stress. It's so deep that you can't feel it. I do so much to relax I could be the Poster Child for relaxation techniques and healthy living. I'm actually taking 25 mgs of Elavil, but not for anxiety; it's for the pain. I've been on other things; the gamut really Ativan, Xanax, klonopin, along with most of the SSRI's out there, but my anxiety tends to be situational. It's not a constant, chronic thing. It's ugly when it raises it's head, but 90% of the time I feel basically normal. That's why I'm not on any meds other than the Elavil. I listen to all kinds of relaxation CD's, have a very peaceful cacti garden where I go outside to relax, I play the guitar (I'm no Michael Shenker, but it's fun and relaxing to play) take long warm baths, cuddle with my wife, etc. Also, I've started tutoring kids after work. I'm working with a kindergartner and two 1st graders and am having a blast teaching them how to figure out sounds and read. It's something that really helps me focus on something other than my problems, which in turn fulfills me and relaxes me.

A couple of things - you might consider practicing a more Zen-like philosophy. Focus on today, live today, forget yesterday, and tomorrow doesn't exist yet. Enjoy today as much as you can. When tomorrow comes, enjoy that day. Take things slowly and focus on the present. It takes practice to do this. Second, if you feel that stress comes on from an occasional external trigger like a big meeting, or some other event, you can talk to your doctor about getting a script for Inderal. This is a beta blocker and non-addictive. Basically, it prevents adrenalin from being acted on by the body esp the cardio-vascular system. You take one about 1/2-3/4 hour before the event and it lasts several hours. You feel calm without feeling drowsy. It may help you level out the peaks a bit if this is indeed what triggers you during the day. But from your later post about long-standing issues in your past, you sound like you could benefit from therapy with a competent and caring therapist. This may be essential for you to get to the point where you can fully recover and not constantly relapse.

--mb

[SteveMalk]

Biggest secondary problems from CPPS: Anxiety and Depression

But the real question is...did anxiety and depression exist FIRST, and the pain SECOND or vice versa?

Speaking of Dr. Sarno, I have been at the crossroads many times in this struggle with horrible Levator Ani Syndrome (CPPS) for nearly 10 years. I go from...is it TMS or is it just mostly physical. I'm glad Dr. Sarno and TMS is getting a bit more attention here because I have met one lady who had such bad pelvic pain for nearly 3-4 years, did the Stanford/Wise-Anderson Protocol, did all kinds of muscle injections, warm baths, stretching, relaxation..you name it, and it only made her feel WORSE. Then she got sick of it, and went full blown TMS approach with it...and sure enough, she beat it. But the funny thing is, it took time and most of all, like many of you here...her symptoms MOVED around here body into other things like the eye issues, IBS, back pain, etc. She said once it moved around on her, she knew TMS was the right approach and she beat chronic prostatitis / chronic pelvic pain syndrome 100% by just doing the mental work.

How she beat it: she did a lot of journaling to get at what was bothering her, she stopped fearing the pain and even talked back to it, and most of all...did things DESPITE her pain. At first, things got worse. But according to her, after a while, her subconscious gave up the "pain fight" and it all let go and then moved to other areas of the body to try and distract her. It tends to move into areas of pain that you would FEAR the most, otherwise if you don't fear it, it will not get your attention.

Now, is this the way to really approach CPPS? I think we all agree it is stress based, so the TMS approach makes logical sense. But I just don't know anymore. I think it can vary from person to person for sure. But I sure as heck don't dismiss it by any means.

I have now seen both the Stanford/Wise-Anderson Protocol AND the TMS approach work for people, so it is tough. You really can't mix the two to make it work...they are two very different approaches.

[strobers]

Biggest secondary problems from CPPS: Anxiety and Depression

But the real question is...did anxiety and depression exist FIRST, and the pain SECOND or vice versa?

Speaking of Dr. Sarno, I have been at the crossroads many times in this struggle with horrible Levator Ani Syndrome (CPPS) for nearly 10 years. I go from...is it TMS or is it just mostly physical. I'm glad Dr. Sarno and TMS is getting a bit more attention here because I have met one lady who had such bad pelvic pain for nearly 3-4 years, did the Stanford/Wise-Anderson Protocol, did all kinds of muscle injections, warm baths, stretching, relaxation..you name it, and it only made her feel WORSE. Then she got sick of it, and went full blown TMS approach with it...and sure enough, she beat it. But the funny thing is, it took time and most of all, like many of you here...her symptoms MOVED around here body into other things like the eye issues, IBS, back pain, etc. She said once it moved around on her, she knew TMS was the right approach and she beat chronic prostatitis / chronic pelvic pain syndrome 100% by just doing the mental work.

How she beat it: she did a lot of journaling to get at what was bothering her, she stopped fearing the pain and even talked back to it, and most of all...did things DESPITE her pain. At first, things got worse. But according to her, after a while, her subconscious gave up the "pain fight" and it all let go and then moved to other areas of the body to try and distract her. It tends to move into areas of pain that you would FEAR the most, otherwise if you don't fear it, it will not get your attention.


Now, is this the way to really approach CPPS? I think we all agree it is stress based, so the TMS approach makes logical sense. But I just don't know anymore. I think it can vary from person to person for sure. But I sure as heck don't dismiss it by any means.

I have now seen both the Stanford/Wise-Anderson Protocol AND the TMS approach work for people, so it is tough. You really can't mix the two to make it work...they are two very different approaches.

Great post. I have been seeing a great therapist weekly. It's a combination of talk therapy and EFT (emotional freedom response) and I find it refreshing. I purge a lot of junk in our sessions and by the time I get home I'm pretty exhausted.

That last paragraph you wrote really hit me pretty hard because I have always had this fear about losing my hearing or my eyesight and after I got IC/CPPS and now I have issues with both of these areas. However, the pain/negative symptoms didn't really move around. They just have affected more parts of my body. That's mentioned in Sarno's book too, that for some people the symptom is replaced with another symptom and for other people the symptoms just keep on regenerating into other physical problems.

There is no doubt that the mind plays a crucial role in IC/CPPS. I was seeing a hypnotherapist, a really great one who suffered from IC and tinnitus for ten solid years. She had the whole hydro extension done where the doctor found the tell tale signs of the disease in her bladder and her ears were ringing off the hook. She said that everything completely went away the day she left her boring, unfulfilling job and went to school to become a hypnotherapist. She said both symptoms, and she stated she had them bad, just evaporated.

That's one of the reasons I'm tutoring little kids. I work full time with emotionally disturbed adults in a mental hospital. These "kids" are 18-22 and have just about every mental illness and personality disorder known to man. It's a crazy place to work and I'm starting to become convinced that I am absorbing a lot of toxic material from my students and the rest of the patients in the hospital, which is contributing to my issues. I can't afford to retire yet, but I thought that since I don't really feel fulfilled at my full time job, I would feel fulfilled in my part time tutoring gig. I don't know if it's my imagination, but I really do feel better working with these kids. I feel like I'm actually doing something that matters and in turn I feel better mentally, physically and spiritually as well.

[strobers]

My uro (one on only) said to me "You are completely 100% normal".. ok, doc, what do I do? "Just don't think about it"..

OKEE DOKEEY!

I'm getting more and more pissed off at traditional Western Medicine. If they can't match your condition to something in a book, that means you are healthy ...

Just today I read this exchange on another board:

http://www.fatwallet.com/forums/message ... #m11940291

This guy is a GP, I believe.

When I read stuff like this I just want to go find a neighborhood URO and pound on him for a while. What a bunch of insensitive jerks. Wouldn't that be great that when people were *&^holes about your medical condition you could give them what you have for a couple of weeks? Wouldn't that just the whole face of "modern' Western medicine? God, please hear my prayers.

[SteveMalk]

I was seeing a hypnotherapist, a really great one who suffered from IC and tinnitus for ten solid years. She had the whole hydro extension done where the doctor found the tell tale signs of the disease in her bladder and her ears were ringing off the hook. She said that everything completely went away the day she left her boring, unfulfilling job and went to school to become a hypnotherapist. She said both symptoms, and she stated she had them bad, just evaporated.

PERFECT example of TMS.

Many say that pelvic pain is the same thing, even Dr. Sarno and many others. But who knows really? It is good to at LEAST see the possibility of it and not rule it out.

[chrisjiujitsu]

This was my worst problem. I would get flared up about 1 or 2 hours after orgasm. It would start to calm down the next day. I was always in pain. I began to compulsively masturbate daily just to make sure it still hurt. My doctor was telling me to do this also so that didn't help. I had got an exercise regimen that got this under control for me. I now can have an orgasm without thinking I am going to have to pay for it. This regimen involved some durable medical equipment and biofeedback with a physical therapist schooled in its methods. It took about 6 months and it only really helped this symptom which was my worst one. Basically I found out those muscles are to tight when I am relaxing and not tight enough when I am tightening. You really need to have a therapist that can do biofeedback for you to do the exercises. If you live in a urban area there is probably one by you. I will find out what they are called unless anyone else can help with that.

[kevin]

Yes, my urologist told me to have an orgasm every 48 hours. From the perspective of my symptoms, that was terrible advice.

[strobers]

This was my worst problem. I would get flared up about 1 or 2 hours after orgasm. It would start to calm down the next day. I was always in pain. I began to compulsively masturbate daily just to make sure it still hurt. My doctor was telling me to do this also so that didn't help. I had got an exercise regimen that got this under control for me. I now can have an orgasm without thinking I am going to have to pay for it. This regimen involved some durable medical equipment and biofeedback with a physical therapist schooled in its methods. It took about 6 months and it only really helped this symptom which was my worst one. Basically I found out those muscles are to tight when I am relaxing and not tight enough when I am tightening. You really need to have a therapist that can do biofeedback for you to do the exercises. If you live in a urban area there is probably one by you. I will find out what they are called unless anyone else can help with that.

Chris, if you don't mind could you please send me that information or just post it? I haven't had sex since October 13, 2007 and I can tell you that the inability to have some sexual release is almost as bad as the wretched CPPS.

[chrisjiujitsu]

The therapist I saw was Kathleen Novicki

http://ucanhealth.com/local/service/?si ... Novicki_Pt

I dont know that site other than google just gave it to me. She worked at sports therapy in Cincinnati Ohio. You should be able to find a similar doctor in your area. The only thing she really did for me was biofeedback and gave me instructions of what to do at home. There are certain stretches you need to do as well. The exercises are kegels and most on the forum do not approve, but they work very well for me. Here is how it works. You have to relax before you can strengthen. I bought a piece of biofeedback equipment for about $500. On the back it says manufactured by Thought Technology Ltd. model number=sa8825. It has this little thing you put in your butt to measure your contractions. This thing is important because what you think your doing and what your actually doing are two different things. The regimen goes like this, you would adjust the settings so that it reads a little under neutral for the your relaxed state. You will do a Kegel and hold it for about 10 seconds (not a hard Kegel) and then relax it for 10 seconds. You are focusing on relaxing for about 2 or 3 months doing this. You start out with 10mins a day and work your way up to 30mins. Thirty minutes is a long time I admit, but we are desperate. Once the therapist says you are at a decently relaxed state you can start working on strengthening. Strengthening is much harder to do because your trying to get the thing to read higher than you feel you can contract (in the relaxing stage it is the inverse-its much more pleasurable to try to relax more in the relaxing 10secs). After 3 months of strengthening I noticed orgasms dont cause flares and they are much more intense. You really have to see a therapist, you may be to tense to do the strengthening and would never know it. There are some stretching exercises I did before and after the kegels. The stretches were specific to my body and where I was found to be tight, so you would really need to see a good therapist to determine what is right.

See if you can find a therapist in your area. This is similar but very different to Dr. Wise protocol. His protocol may work better, I have never done it. I do my own trigger point massage and think I may not need to go see him.

[strobers]

Thanks for the info. Unfortunately, when I first got smacked with this thing I went to a PT who had me do Kegels and they made me much worse. I don't think they would affect me like they do you. I'm probably just going to pretend my penis does not exist as the awareness of my inability to indulge in sex really leaves me in a bad state mentally. Thanks for taking the time to post a detailed response.

[strobers]

I haven't had sex since October 13, 2007. That episode cost me almost 3 1/2 weeks of my life. Since then I have had good days and bad days. Currently I'm having an O.K. day. Mainly frequency and a little pain.

On Valentines Day I had a slight twitch in my left calf muscle that went away after about an hour. Intermittently since then I have had a similar pain that has varied in intensity. This afternoon I noticed the pain in my left calf and also a little in my left butt cheek. I took some deep breaths and told myself not to panic, that everything was O.K. It went away about 1/2 an hour later and I haven't had it since then.

Do you think that it's possible that the lack of sex in and of itself is causing my pelvic area to tighten up even more, which in turn is causing my chronic prostatitis / chronic pelvic pain syndrome to get worse? Is it possible for muscles to start contracting, spasming, etc. because there hasn't been any sexual release for awhile?

Regarding the act of sex itself; I know that I can't live the rest of my life without sex. Eventually, I'm going to have to do something or I'm going to go crazy. I've read some posts about stretching after having an orgasm, taking a bath, or going to sleep right afterwards. Is there anything else someone could recommend? For those who have this symptom as part of their overall CPPS, how do you cope? How do you deal with it? What do you do?

[HelpADude]

Everyone is different but the consensus seems to be not to over do it. For me, it provided short term relief then symptom got worse the next day in the beginning of my chronic prostatitis / chronic pelvic pain syndrome journey. Now, it really don't make a difference as long as I keep down to once a week or so.

Afterward, make sure you do the V-stretch by the wall and hot bath would also help.

[chrisjiujitsu]

I find that very interesting. Your response is the consensus I have seen on here, so maybe I am the freak. However, I guess that is a widely used treatment for some reason.

I had a similar experience to my Kegel exercises that proved to be beneficial. I am a chemist and don't get much exercise since I had this thing. I tried doing a labourer's job at work for 4 hours. I was sure I was going to be in a lot of pain at the end. I was surprised to find I was in pain everywhere else but the places I was afraid of and it was all good pain. The job used the whole body and there is a lot of twisting and using core muscles. I was pain free for a few days after. Unfortunately it caused my indigestion to flare up from wearing a respirator. This is likely a result of anti-inflammatory drugs that I have recently stopped taking. I am going to try that labourer's job again when I get a chance and will post it here if I get similar results. There was one guy who I read saying exercise pretty much fixed him.

You may be different, but there is likely a way to fix the problem and you will eventually find it. Not freaking out in the mean time is a good idea.

[garyholc]

I found that by having a release, I tend to feel better for a few days. I always ensure that afterwards I either go to sleep or have a hot bath just to relax the muscles again. Usually, best do it in the evening, then have a hot bath, then go to bed. I havent had any problems doing it this way.

[Canbob]

Typically I have a lot of pain for several days after an ejaculation. As a result my frequency was down to maybe once a month. The wife is definitely getting frustrated. Last weekend I tried the sex then hot, 15 minute bath trick. It seemed to work pretty well for me. I had some sensitivity at the tip of my penis and achy testicles for a few days but nothing major. Strobers, I suggest you give it a try before you explode.