First Entry - Chronic Pelvic Pain and a man down on his, well...everything

Hello all,

I'm new to this site, and new to the idea of TMS (thank you Howard Stern - a champion of Dr. Sarno's work...and a bababooey to you all)

I've been suffering for three years from Chronic Pelvic Pain. I've had all the symptoms one could imagine, with an ever growing list of pains, suffering, suicidal thoughts, and more questions with nearly every 'answer' I've found.

Three years ago, I was originally diagnosed with Chronic Bacterial Prostatitis. Upon receiving a lengthy course of antibiotic treatments, the 'infection' (as the studies show only 5% of men with CPPS actually have any sort of infection within the prostate) was removed.

There after, a diagnosis of CPPS was introduced to me. This included symptoms that vary in many ways, including (but certainly not limited to):
* Frequesnt Urination
* Erectile Dysfunction
* Pain in perenium
* Pain in buttocks
* Pain in Legs, Thighs, and Lower back

After suffering with this for about a year, I attended the Wise-Anderson clinic in California to address a 'holistic' approach to treating my pain. Upon several months of gradual reduction in pain/symptoms, I developed a burning sensation - this went from the back of the legs at my knees all the way through to the middle of my back. Redness developed in the genitals. Burning was constant, then turned to tingling. These were items which couldn't really be explained by the experts with the Wise-Anderson protocol, and was wrote off as an 'overstimulated nervous system' - No S%*@!. Every single day of your life in pain, measuring said pain constantly measuring it on some bogus numeric scale (is it a 3 out of 10, or is it an 8 out of 10? Who the hell can even remember what an 8 felt like two weeks ago versus the 8 that you render it to be now?), who's nervous system WOULDN'T be overstimulated??

I was so depressed that I could barely perform any of my functions. My career as an engineer has suffered, my friendships have suffered, my ability to even go and get out of the house has been limited...

Finally, an osteopath suggested I have an MRI done. Not surprisingly, two bulging discs and a protruding disc in my lumbar spine. Then of course, as the pelvic pain (ie:, trigger points) reduced, the 'nervey' burning, tingling increased substantially.

I've been to Urologists, Neurologists, Physical Therapists, Osteopaths, Chiropractors, Accupuncturists, Naturopaths, TCM Practictioners, any of this sound familiar?

With the pain, I've continued to isolate myself. Alone, depressed, and desperate many days. Most days. Every single goddamned DAY!!! OCD developed in the form of a constant measuring of where the pain was at, would my junk 'work' if I were ever to actually have faith enough in myself and my current issues to reveal it to a woman I was interested in, but that's always been an exposure/vulnerability that I'm less and less inclined to approach. Being 34 and single, I'm currently aching for the chance to FINALLY meet someone and maybe (just maybe) have the opportunity to start a family. Have always put it off though until 'I was healthy'...however, that day has yet to come.

Finally, over the holidays I had my members of my family out to visit me. In the midst of my father's visit (in which I do harbor repressed anger/suppressed rage due to the high amounts of pressure he put on me growing up as a child), I had a complete relapse in nearly ALL of my symptoms. Also not surprising, prior to his visit I was feeling pretty good...pain was limited to one region, and felt like I could almost 'function'. But then, every single item mentioned above came back one morning with a vengence. I panicked...while trying to suppress it and 'save face' in front of my father (because the last thing he thought you should ever do was wear your emotions on your sleeve - that's something weak people do).

Nonetheless, I finally gave in. I had heard Howard Stern mention this again (yes, I am a regular listener - hopefully that won't be held against me in this forum), how Dr. Sarno saved his life. So I purchased the Mind-Body Perspective...and have found so much of me (as I'm sure we all have) in the book. Ive always been harder on myself than anyone else, I hold myself to a standard that I would never hold anyone to, and every mistake I've ever made has been met with rebutles to myself of 'you're a moron, a complete failure, how could anyone love me?'...amongst many other qualities and situations I would endure due to my lack of self-esteem.

I've read through the book once. Am now on my second go. Have decided to say to hell with it, have begun a daily yoga practice (despite what the professionals have instructed me to do - only mild exercises approved by them with lots of bed rest), and am diving in to the TMS recovery program.

Even in some mild journalling I've started, I've found that I will have these moments thereafter wherein the pain is gone (or, at least seems relatively gone compared to the hell I'd been in before - I would dare say 'normal' if I could even recall what the hell 'normal' felt like anymore). I know the pain will come back (as it always does).

I put this off for the longest time. Thinking that this couldn't be a manifestation derived from the unconcious brain. I always felt dealing with the physical pain was far less daunting than what the mental pain would bring. I'm scared of what's inside my head - hell, I would refuse journalling of any sort for years prior, because as soon as it's on paper - it becomes REAL. And that was something I was just not willing to undergo.

Until now. I'm left with no other option. However, I'm holding on to hope...as that seems to be the only thing left to ride out.

I was never able to appreciate any aspect of life...but now, I know that if I can ever find my way out of this hell, I will live, love, and laugh to the fullest forever and ever. But with that, I have to go ahead and find a way to do so in the meantime. No easy feat. But something one can only hope for.

Life's too short and too precious to be defined by my pain.

Thank you for listening,

 

Congratulations Joel on embarking on what will no-doubt be the solution: Dr. Sarno's approach. It sounds like the Wise-Anderson approach helped you, because it uses mind-body understanding, but Dr. Sarno's understanding cuts to the very core of mind-body pain.

It is important that you do the SEP program and be patient, and find ways to soothe yourself. You are becoming physically active in a ways that are new, and satisfying, and challenge the beliefs you've taken on from the medical community, such as structural issues. This is an important component.

You describe what many of us here have felt: pain, anxiety, isolation, depression, hopelessness, supressing feelings, pressuring ourselves, believing our Inner Critic...and so on. Everyone you hear from here as been through this living hell, with all the confusing diagnosese and the doctors who don't really have a clue. The medical system itself created rage in me.

This is a huge opening for you. What I call a sort of opening or attunement to what our "soul" wants. Deep down there is a very real drive to come to deeper and deeper intimacy with what we are experiencing. To be real with ourselves. This is scary, but it is very satisfying. As we feel our anger, hurt, neediness and so on, a precious self-compassion develops. This growth is the core growth found in the practice of many spiritual teachings that urge us to "be with what is." It is the hard-won fruit of long-term meditation: making friends with ourselves. You can undergo this, because some kind of inner wisdom, including the body symptoms have brought you here. You are obviously ready. Take heart!

Also, I observe there is fear about the pain and functionality, and there is fear about the psychological investigation. My advice is try to observe that fear and don't go along with it. Meditation and mindfulness practices build this muscle.

If you find you can't do self-inquiry and journaling on your own, that you need support, you can find a therapist to help. Give yourself all the kind support you can.

No one here can diagnose your problem as TMS. What helped me was getting an MD trained in the Sarno approach to verify and support my self-diagnosis. This helped me proceed with more confidence that I wouldn't hurt myself, and helped me turn all of my attention to "thinking psychological" rather than physical.

Good luck!

Andy

 

Andy,

Thank you for your insightful response. I do practice paradoxical relaxation techniques (as outlined in the Wise-Anderson protocol), however, the techniques themselves do not partake in the idea of 'mindfulness' in a way that is rewarding or in any way satisfying to the heightened anxiety I continually undergo.

I have registered for an 8 week mindfulness course. I have went back to writing songs, playing the guitar as often as I get a chance, and generally trying to find myself again in any enjoyable activity (beyond the constant obsession of pain measuring). This, along with the journaling, has already allowed me to address several key components of past pain that I have not let come to the surface.

Somehow, I always knew there would be a time wherein I would have to go into myself. I've always been highly sensitive to my surroundings, but have found many destructive ways to suppress these feelings. Only now am I really able to look at the psychological aspects of my pain. It can be both frighening, and inspiring.

I try to bare in mind that this pain has been given to me as a gift. In my darkest of times, it can be very difficult to see this. However, in the moments of awareness, I am able to see how this has been given to me in order to reconfigure the destructive nature of myself...and find a healthier approach to living a full and rewarding life.

And of note...I can already accept the self-diagnosis. I, like you, have varying levels of rage towards the medical system. I've found that (perhaps sadly), the best doctor I've found is myself through my own research. In fact, even the thought of my past experiences with medical professionals infuriates me now.

I've spent three years (well really, my entire life) in fear. These walls however, are begining to crumble around me.

Thank you for taking the time to write me back.

 

@JoelH sorry to hear about yr struggle for the last 3 years. I'm going to give u some reasons why I think u may have TMS. I am no TMS expert or doctor so pls take everything I say with a pinch of salt. My aim here is to just to help u think along the lines of why this may be more of a MindBody syndrome than a real physical one. Ultimately u have to decide for yrself.

Its seems that the initial infection cleared with the antibiotics but the pain still persists. This would be in line with what Dr Sarno says about TMS. He says that there may be some initial trauma but that with time, given the body's innate wisdom to heal, all symptoms should go away. The fact that pain or other symptoms persist means that it is likly to be TMS. So that may be yr first clue.

Its also strange that after you attended the Wise Anderson clinic, yr original pain was reduced & then u got other symptoms elsewhere. That too is a hallmark of TMS. Clue No. 2.

That u were told that u have an overstimulated Nervous System may be clue No. 3. Many TMSers have an overactive CNS which can cause all kinds of pain & weird sensations.

Clue No. 4 u may have TMS is that yr pain came back when yr father visited. You may need to examine the rage u feel towards yr father as well as other issues in yr relationship with him.

Many of us here have felt frustration & despair in our encounters with the many doctors who have not been able to help. Some don't know how & some just can't be bothered. But that may be a good thing because if they cannot diagnose anything pathological it may be only physiological which means it is very likely its TMS. Clue No. 5!

Andy's suggestion u do the SEP is spot on & is very good advice.

There are more and more ppl posting about Pelvic Pain. In fact I started a post the other day about whether it may be a fad like ulcers were in the 60s & 70s. @Steve Ozanich thinks its highly likely too. He has written a very good chapter about this in his book The Great Pain Deception. U may want to read that post as well.

I have posted this link elsewhere recently. Its an interview with Dr. Schubiner by Abigail Steidley.
http://vulvodyniacoach.files.wordpress.com/2008/12/schubiner-interview1.mp3

Abigail suffered many yrs with Pelvic pain, overcame it & is now a life coach. Dr. Schubiner as u may know has written Unlearn yr Pain & is a great authority on TMS which he calls MBS. In this audio link he specially talks about why he thinks most Pelvic Pain is MBS & answers questions like;

How do we know that the pain is MBS & not something structural?

How do we get past the notion that the pain is not dangerous?

Why increasing activity is important?

Why pelvic pain is a physiological reaction & not a pathological one & the difference between the 2.

If u have time listen to it.

I hope this is helpful & good luck.

Mala

 

Hi, Joel. You got some very good advice from Andy and Mala. The SEP program is really wonderful.
Stick with it and try to do the suggestions each day. Journaling helped me most to heal from severe back pain.
I learned that it came from a lot of repressed emotions in my boyhood. I was able to better understand my parents
and older brother and the emotional stress they gave me, and through understanding I was able to forgive them,
mentally, because they had passed on by then.

It is often not easy to delve back into our childhood traumas, but when we do, we come out healthier and happier.

Your pains are just from your subconscious telling you that you need to uncover and deal with traumas of the past.

I find it very helpful to practice deep breathing and find things to do and think about that give you pleasure and
try to find ways to laugh.

 

Hi Mala,

Thank you very much for the post. I have listened to the interview with Dr. Schubiner twice now. A lot of great stuff for me to focus on.

Already in the past four days of the SEP, I've noticed my pain moving around. Was heavy in the genitals and lower extremities yesterday, today it's all in the lower back. Agh!!! This will be an ongoing stuggle for me, the hardest part is remaining steadfast in the protocal, and continuously reminding me and my brain that this is a 'psychological' versus a 'physical' disorder.

Mondays are always the worst for me. Brand new week, same old pain.

Thank you for your time.

 

Hi Walt,

Thank you for the advice. I'm like many here, in that I've found it difficult to view or see any childhood traumas as I've always considered (for the most part) that I had a 'good' childhood. There have been numerous stressors in my current life, which I've spent more time on attempting to address. However, through journaling I've found there is a lot of pain for me to look over.

My question always is this. When I do find trauma's from my childhood through journaling, is the act of simply writing it down, journaling the pain/trauma induced in me, going to be enough to be able to 'let go'? How exactly will I ever know when a matter is 'resolved' in my unconcious brain? Do I continue with the journaling until it no longer evokes any emotions whatsoever?

This is all new to me so if I sound a little naive...well, I am!

 

Hi Joel. I started doing the SEP a few days ago. Like you, I'm finding it very difficult to come up with childhood traumas. I had (and still have) loving parents, lived in a nice house in a great town, went to a good school and had lots of friends. In my teens and 20's, I had no problems meeting girls, always had the money to travel with friends, had nice cars and had an all around great life. I'm a major TMS sufferer, but what am I repressing from my childhood? I don't have the answer to that. What I can say is that years ago, I had crippling back pain. Doctor said I had degenerative disc disease and would always have some pain. Unfortunately, I believed that and continued to have pain. Then I discovered Dr. Sarno and his HBP book. Within a month, I was back pain free, and have been for at least 7 years. That's why my nickname on here is "Tru B Leever".

14 months ago, I suddenly started having this feeling like my bladder was always full. I went to a urologist and was diagnosed with prostatitis. After 20 days of Cipro, it was no better, so I was put on 10 days of Bactrim DS. It gradually got better over the next few months, but never went away. After reading in Dr. Sarno's HBP book about most cases of prostatitis being TMS, I latched on to that and tried to force myself to believe. Last week, it came back again. I've began doing the SEP and I have been doing guided meditation both morning and night (thanks youtube). Unfortunately, it does not seem to be getting any better and a voice in my head keeps saying go back to the doctor. But after seeing two urologist who both said "prostatitis", I have no faith in them. I'm trying to keep my belief in TMS going with this, but I can tell you it's really difficult.

I wish you the best in your journey to a cure, and if you find anything along the way that you think may help me or others, please post it.

P.S. - I also listen to Howard Stern! LOL

 

Hi Tru B Leever,

Prostatitis can be so frustrating. I'm with you in your suffering, it's a daunting affair.

Often times, the prostate itself gets a bad rap. Often, Urologists will go ahead and render it "prostatitis" due to their combined A) Lack of knowledge surrounding Prostatitis vs. CPPS, and B) Their lack of concern with this problem, as there's no money to be made in Prostatitis, and LOTS to be made with Prostate Cancer. I've had one urologist inform me to 'drink a lot of water and take some Cialis", with another suggesting that he could easily cut out the prostate. These two extremes of disregard both infuriated me and left me feeling 'hopeless'

First thing I would do, is verify whether or not there IS actually an infection in the prostate (most studies indicate that approximately 5% of 'Prostatitis' actually is related to bacteria. So what about the other 95%????

If you can get a urologist who will actually do you a solid, drain the prostate and VERIFY that there is an infection present. Often, they will do a drainage and put it under a microscope, and determine that due to the white blood cells being present, that there is an infection. This however can be misleading, as White Blood Cells do not necessarily indicate in infection, as they can be present in large amounts just with simple inflammation (another tell-tale sign of TMS). Lab testing would be ideal in this case.

If there IS an infection, I would suggest a 6 week course of Cipro (or another Sulfate based Antibiotic). Request your urologist perform a weekly drainage of your prostate while undergoing treatment. Hell, there are ways to even drain your own prostate - I won't get into the details here, as they can be rather offputting for the rest of the viewers of this.

If there is NO infection present, I would then consider this a CPPS manifestation. At that point, there are a few ways to skin this cat.

The Wise-Anderson protocol was great in that it does address the releasing of 'Trigger Points', both within the Pelvic floor, as well as other areas which can refer pain to the region (Abdominals, Glutes, etc). You can also get a trigger point workbook, which shows referral pain patterns. Rolling on a tennis ball (or lacross ball in my instance) to release glute TP's, as well as a Theracane for external points. With this, if you could find a Pelvic Floor Therapist to help you identify these points (you could read the book 'A Headache in the Pelvis', which is the book written by David Wise and helps touch on many areas referred to by Dr. Sarno - A-Type personality traits, Anxiety, etc. It doesn't however, delve as deep into full TMS. So with me, it did help with the Pelvic Pain symptoms - however with myself, as soon as I was feeling 'almost normal', the pain changed and manifested in a different way. Ways in which the experts with Wise-Anderson could not figure out.

The physical therapy is to be combined with relaxation techniques (which sounds like you already have down fairly well). This (my belief, maybe no one elses) can be a great way to help release those sore spots, while continuing to journal and delve into matters of TMS.

If it came back again last week, I would look into perhaps a 'stressor' which may have caused a flare-up for you. I know my most recent flare up was the result of my father visiting me over the holidays (the more and more I delve into this, the more I realize although I had great parents that did their best, they - especially my father - put a world of pressure on me, in which I still harbor a lot of suppressed anger/rage).

Meditation, Excercise, - but most importantly, practice the TMS protocol. Talk to the brain. Notice if the pain/symptoms move or change with acknowledging the pain's TRUE cause - the unconcious brain. I've found that (even yesterday) my symptoms moved FOUR times on me.

Morning started with bad back ache/pain. As soon as I acknowledged it, it moved to my thighs. Upon this acknowledgment, it then moved to the Perenium, and after that, to the rectum and genitals with burning/itching.

Maddening...but also enlightening.

We'll get through this my man. A bababooey to you. (Fla fla flow-hy, Ma-ma-monkey)

 

You made me laugh with this because I bet so many people are going to see that and be like, "what the heck does that mean?" LOL

Thanks for your helpful words. You are so right about the urologist. The first one I went to just asked me a few questions and then put me on Cipro. I never even had to remove my pants. The second one at least did the DRE (gotta love that......NOT). I ended up doing about 4 weeks of antibiotics. The weird thing is, I have no other prostatitis symptoms. No weak stream, no difficulty starting, no cloudy urine or blood, no burning or pain while urinating. The only thing is this slight, dull feeling of fullness like I have to go, even if I just went 5 minutes ago.

I have read about the Wise-Anderson protocol before. In fact, I spent a lot of time searching for external trigger points (can't get myself to try internal). Not much out there on that though. I also tried some pelvic muscle stretching but didn't feel like I got any results from that. Plus, if it's really TMS, then stretching shouldn't really do much for me, right?

My ears perked up when I read what you wrote about your pain moving to your thighs. Two days ago, out of the blue, I started getting pain in my right hamstring. Interesting how when I within a day or two of me diving in hard to the SEP and meditation, I suddenly get a pain in my leg.

It's great that you're giving me some information that I've given to others on these forums. I find it easy to help others on here when I'm feeling good and feel like I conquered my TMS, but during times like now where I'm fighting this inner battle with my brain, it's nice to hear the re-assuring advice from other TMS sufferers like yourself.

Stay positive, and I'll try to do the same!! (Ta ta toothy, fafa flunky)

 

Hello all,

On day 24 of the SEP. Have been having some great days, and some not-so great days. However, I'm really finding some deep insights into myself these past several weeks. Really delving into the ongoing perfectionist/goodist traits I've carried with me for a very long time.

Have had a few days where the pain has moved. Had a couple of days with bad foot pain, another with shoulder and neck pain. The past week, the pain (when it arrrives) has centered back into the perenium area. It can be both maddening and frightening....now that the pain has centered back in the groin, I'm almost wondering if I've come to some kind of stall with the program. Or if there's something deeper that I'm not able to get to myself without some psychotherapy.

Argh...frustration and adulation. The yin and the yang of TMS.

I'm just finishing up a nine day vacation in Costa Rica...today my pain is at its highest as I'm stressing over returning to 'reality'.

 

Joel, welcome! I have done parts of the structured program, most of Schubiner's book, inventories of illness and pain after first reading Sarno years ago... We do this imperfectly, really, one day at a time and become learners, together.

I signed on today because I fell of my new horse Thursday and was feeling FINE until a friend said, "Oh, maybe it's like a car crash where you don't hurt till the THIRD DAY?" ...and this is the mythical THIRD DAY and bam, I am scared and literally listening for pain my back. I have never felt this before, in all my experience with mindbody work. I am listening, watching for the pain to arise. I see glimpses and I acknowledge the fear of falling and tell the unconscious, the ego defenses, thanks, but I don't need the pain to be expressed via my back.
There is nothing wrong with my back, other than my fear.

I fell into soft shavings and old horse poop! It was a wonderful fall, I rolled like they taught us in grade school gymnastics. I rolled on my shoulder and into a standing position. Brushed myself off and got back on and kept riding.

I am a fear-driven person who loves lying in bed, like a princess, and suffering. I wish this were not a piece of who I am, but I got a lot of mileage out of real physical disasters when I was very young and they seem to grow and cultivate in me like an addiction. So grateful for Sarno, Schubiner and the others. It's funny that you got to Sarno through Howard Stern (couldn't listen if you paid me to) but we will be grateful for whomever gives a shout-out to mindbody medicine in a world where Big Pharma makes up diagnoses to sell their drugs. Nobody on this forum is getting uber-rich selling health in bottles! I am so very grateful, as always, to get to be here.

Palms together,
bg