_Headache In The Pelvis_ success story

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tom23

_Headache In The Pelvis_ success story

Post by tom23 » Fri Nov 07, 2003 2:14 am

Hi folks,

I just wanted to let everyone here know that I wrote the story posted here in the success forum "A Headache in the Pelvis, case history number 1" and emailed it to David Wise. I am continuing to feel fantastic and my symptoms are still at an extremely minor level. Most days I don't even notice them. When I do notice them they are nowhere near as intense as they used to be and I treat them as a reminder to relax and try to manage my stress in a healthy way. I still have many sources of stress in my life - maybe even more than I had at the height of my symptoms - but that stress doesn't translate into symptoms the way it used to. I don't think of myself as being cursed anymore. When you are starting out with the protocol described in David's book there are a lot of ups and downs -- it's always two steps forward, one step back - don't get frustrated, be patient. It has been almost 3 years since I started on the program outlined in _Headache in the Pelvis_. I found both the physical therapy and the relaxation therapy to be essential to my healing. At first I found the relaxation to be inconvenient since you are supposed to do it every day -- even twice a day. I listened to the relaxation tapes which David made which are each 30-45 minutes long. I started off doing it a couple times a week, but David insisted that if I wanted it to be of substantial benefit that I needed to do it every day. Eventually I learned to enjoy it, despite the inconvenience it posed to my normal schedule. I practiced it twice a day (morning and night), along with physical therapy once a week. When I started to slowly get better I imagined that it was mostly the physical therapy that was helping me. It was indeed helping me I believe, but I rationalized it so I wouldn't have to do the relaxation as often. I wanted to believe that I could get by without the relaxation, but in retrospect the relaxation training was absolutely essential for me to get better (when I stopped the relaxation my progress would stall). Believe me folks, you can be holding an incredible amount of tension in parts of your body without even being aware of it. It takes A LOT of practice to learn to recognize the subtleties of this tension and to accept it. The act of accepting it is what gives it room to heal. There is no easy way to learn it. It is a skill, and like other skills you can become rusty over time without practice but if you have put in a lot of time in the first place to learn it well you can sharpen it again with a little effort and the relaxed state can eventually become your new baseline. I know it sounds odd to describe relaxation as a skill but that is really a useful way to describe it. Also when you learn it well it will spill over into the rest of your life outside of the times that you are practicing the deep relaxation. That is the whole idea. The relaxation tapes were excellent training wheels for me. I don't have to listen to them every day anymore. Also I found diaphragmatic/abdominal breathing to be very helpful and an important part of the relaxation. This is not discussed as much in the first edition of A HEADACHE IN THE PELVIS which I found surprising since David stressed it to me when I went to see him, but he informed me there will be more information about it in the second edition of the book. The gist is: breathe deeply and slowly with your stomach into your stomach and not with your chest. This stimulates the parasympathetic nervous system which relaxes you, while chest-breathing causes a "fight-or-flight" response which tenses your whole body and releases adrenaline. This also takes practice. Most people who work at a computer have a tendency to hold their breath while they're concentrating.

I found the notion that I was somehow responsible for my tension difficult to accept at first. I have never suffered from deep depression and I have always been a well-liked and successful individual - comfortable in social situations from an early age and nearly a straight-A student (I graduated college with a 3.9 GPA, B.S. in biochemistry). I always thought of myself as being somewhat laid back. When I first saw David his suggestion that I was unconsciously squeezing my pelvic muscles was difficult to accept. I wanted to believe that it was something else - something outside my conscious control that required finding the right medication or procedure. If I hadn't already tried as many medications as I had and felt like I was at the end of my rope I probably wouldn't have started the A HEADACHE IN THE PELVIS protocol. It's definitely a blow to your ego to consider that you are responsible for your problem in some way. Don't be too upset by this though... as discussed in the book, people manifest stress in different ways - some people more physically than others and some people in different parts of the body - the shoulders, neck, head and back all being more common than the pelvis. Some people grind their teeth and develop TMJ. David calls CPPS a "TMJ of the pelvis" as well as a "headache in the pelvis".

One interesting point about my case is that my maternal grandfather had identical symptoms to me for many years of his life, although his were not as intense as mine. For a long time I thought perhaps that I had inherited some kind of anatomical defect (I had a diagnosis of urethral stricture at one point). Now I believe that I inherited instead a propensity to manifest stress and tension in the pelvic region. I think like many inherited traits it can skip a generation or two, and probably often does or else we would see a lot more reports of fathers and sons having the same issues. My brother does not have these problems, but interestingly my mother has a history of chronic bladder infections that are always cured with antibiotics. It is not uncommon I believe for migraines or chronic back pain to be shared between parents and their children.

Another interesting point about my case is that my primary symptom was frequency and not pain. At the height of my symptoms I had horrible frequency that had been getting progressively worse. I think that perhaps more painful symptoms would have developed had I not started with the A HEADACHE IN THE PELVIS program. David has told me that a number of people experience frequency before pain, but not everyone's symptoms develops along the same lines. Apparently I am in the minority here as far as David and Dr. Anderson's typical patients go. When I first saw Dr. Anderson I did not have any trigger points and so he didn't suspect that the A HEADACHE IN THE PELVIS protocol was appropriate for me. After we tried a number of other things that didn't work I talked with David and he suggested I give the program a try. My point is: don't be discouraged from trying out the program if you don't fit the profile of the typical CPPS patient. Clearly there are many manifestations of this syndrome.

I think that if this protocol can help you then you will find it the most satisfying resolution to your problems. You will hopefully not be dependent on any meds to manage your symptoms and you will not be afraid that at some point the symptoms will rise up and devastate your life beyond all hope. I know I'm starting to sound like an infomercial but I'm speaking from my own experience. Some things can help with the pain temporarily of course but I don't think many would argue that in the long run it's nicer to live without them. When I was starting the A HEADACHE IN THE PELVIS program I still took an occasional valium (low dose - 1mg) - mainly to calm my nerves when I was having a flare-up and becoming very frustrated. However, I also found it very beneficial to confront the symptoms head-on during the relaxation sessions and I feel that ultimately those drug-free confrontations are where I learned the lessons most profoundly (confrontation is an aggressive word to use in the context of the relaxation therapy but perhaps you see my point).

Even if you have found something that helps make your symptoms tolerable I think you should try the protocol. Your symptoms can feel better than tolerable - if this protocol works for you at all then you have the potential to feel normal again. It hasn't worked for everyone of course - nothing does - but I think in the future we will see a lot more success stories from people using the A HEADACHE IN THE PELVIS methods.

I wanted to make this post because I knew David had submitted my story to be posted on these forums. I haven't been on any of these forums for over 2 years but I used to visit them every day from work (I mostly inhabited IC forums b/c for some time I had a diagnosis of interstitial cystitis). I know it can be depressing to read about everyone's suffering. I told myself at the time that if I ever found something that helped me I would take some time to let everyone know about it. So, if anyone has any questions in the next few weeks or so about my story in particular or my experience with the A HEADACHE IN THE PELVIS program, please post them here. If you are seriously interested then you should contact David or Dr. Anderson of course... but I know it can also help to hear from someone else for whom the treatment has worked. So I'll only be around for the next 3-4 weeks... then I doubt I will come to these forums again. Best of luck to everyone in your quests for healing!! Don't lose hope :smile: - Thomas

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Re: _Headache In The Pelvis_ success story

Post by MastCells » Fri Nov 07, 2003 2:55 am

Thank you, Thomas! I appreciate your taking the time to tell us your inspirational story.
This is not medical advice. Please consult your physician.

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Re: _Headache In The Pelvis_ success story

Post by alprost » Mon Nov 10, 2003 11:51 am

MastCells wrote:Thank you, Thomas! I appreciate your taking the time to tell us your inspirational story.
Me too - Thanks :-D
This is not Medical advice - Consult your Doctor!

Age:39. Age at onset:31. Symptoms prior to treatment: Golf ball in rectum, severe urinary frequency (2-3x/hr; 5-10x/night); weak stream; painful ejaculation; coccygeal pain; tip of penis pain; general pelvic pain on left; testicular pain; supra-pubic pain. Current | Symptoms: Urinary frequency 1x every 2-3 hrs and 1-2 x a night; mild pelvic pain on left hand side (all symptoms still improving!)
Helped by: Trigger point release; avoiding exercise; pelvic floor relaxation; Neurontin decreased bladder sensitivity somewhat. Worsened by: Exercise; frequent ejaculation; ibuprofen irritates bladder. Made no difference: Diet; biofeedback; quercetin; Steroid anti-inflammatories; Elavil.

****UPDATE*** I am now able to sit again at work all day, and can perform moderate aerobic exersise again for the first time in 8 years!!!

Please read:
viewtopic.php?f=37&t=808&p=3954
viewtopic.php?f=7&t=239&p=1158
viewtopic.php?f=37&t=248&p=1214

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Post by webslave » Mon Nov 10, 2003 4:57 pm

This story proves that the Stanford/Wise-Anderson Protocol helps people with Overactive Bladder (OAB) as well as CP/IC/CPPS. However, my desire to see this forum remain a place for the exclusive discssion of chronic pelvic PAIN syndrome remains undiminished, and people who have OAB will be discouraged from posting here.

tom23

Post by tom23 » Wed Nov 19, 2003 4:23 am

Mark,

I want to clarify that the evidence is quite suggestive that I did not have a case of overactive bladder (OAB). I should say at first that I am not an expert on OAB but I did research it a good bit in considering that it might be my problem. The most definitive piece of evidence comes from the 2 urodynamic studies I underwent at 2 different universities. As you may know, OAB is related to instability of the detrusor muscle. During bladder filling, patients with OAB will exhibit spontaneous, uninhibited increases in detrusor pressure which often correspond with an overwhelming urge to go to the bathroom, sometimes resulting in incontinence. There is an important distinction to be made between urinary "frequency" and "urgency" - the latter being associated with the feeling of having to pee RIGHT NOW and the former being a sensation of having to go all the time but without the feeling that one lacks control. In my case, the urodynamic tests did not reveal the characteristic detrusor spasms when my bladder was filled. Also, my day-to-day symptoms were entirely centered around the feeling of frequency, but I never felt that I couldn't hold it long enough to get to the bathroom and never had an incontinent episode. I think perhaps the symptoms I had are more properly understood in the context of CPPS even though pain was not a major factor for me. David Wise told me he experienced frequency for many years before his pain developed and he knows others with similar stories, though it clearly doesn't always develop along these lines. Frequency-only sufferers may be in the minority and in some cases may have something completely different than CPPS going on, but I imagine there are still a good number of people out there with minimal pain and horrible frequency who could benefit greatly from the CPPS therapies discussed on this forum. I think perhaps those persons' symptoms belong in a sub-category of CPPS. My suggestion would be if they come around to not point them elsewhere but to encourage them to rule out infection, OAB, etc etc before getting deeply involved in any of the therapies discussed here. As far as bonafide OAB cases go, I don't want to speculate as to whether the CPPS therapies could be of help. I know that some OAB cases are caused by spinal injury and in those cases the nerve damage may be beyond the realm that CPPS therapies can address.

Best Regards,
Thomas

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Post by webslave » Wed Nov 19, 2003 5:44 am

Your speculation that frequency without pain may be associated with CPPS in some subtle way could be correct, but until the medical establishment recognizes this as a subset or precursor of CPPS, we shan't either.

Bad as frequency undoubtedly is, I can assure you that the pain of CPPS is far worse. Frequency can be a symptom of CPPS, but can only be recognized as part of CPPS when it is accompanied by pain. That is the current state of affairs.

AFAIK, the urologists who diagnosed you with CPPS, based purely on your frequency, are therefore completely wrong.

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Post by Richard.N » Wed Nov 19, 2003 6:18 pm

Bad as frequency undoubtedly is, I can assure you that the pain of CPPS is far worse
Doesn't it depend on the level of pain and the type of frequency? I can't choose which is worse. They vary and they're both a nightmare.
Richard

Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!

I'm not a medical expert. My comment is opinion. See your medical professional.

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Post by webslave » Wed Nov 19, 2003 6:36 pm

I've had both pain and frequency as well, and for me the pain was much more bothersome.
"The quality of life for a patient with Chronic Prostatitis is similar to that experienced by patients with acute myocardial infarction, unstable angina or active Crohn disease". J. Curtis Nickel, MD, FRCSC, Canada.

"Some patients experience so much pain that the condition is handled much like a chronic pain syndrome that occurs secondary to cancer. Therapy may begin with judicious use of narcotics until the patient experience some relief". Keith B. Armitage, MD et al.

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Post by Richard.N » Wed Nov 19, 2003 6:52 pm

for me the pain was much more bothersome
Absolutely. I wasn't for a moment suggesting that it wasn't. I think my pain, although constant is manageble. The frequency and fatigue is the life changing bit for me. I guess we all have 'favourite' symptoms :-D
Richard

Age: 39. | Onset Age: 30. Onset Date: January 2002. Symptoms (back then): Supra-pubic pain, back pain, urinary frequency, urgency and difficulty, weak stream, nocturia, (and variously) chronic fatigue, IBS. Current symptoms: more frequent than normal, but pretty much under control. Current amelioration: Xatral 10mg, Mirtazapine 30mg. | Worsened By: Stress, binge drinking, strained bowel movements, bloating, sitting on hard surfaces, jogging, and regularly - THE WINTER!

I'm not a medical expert. My comment is opinion. See your medical professional.

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Post by scotsman » Wed Nov 19, 2003 7:40 pm

I found I could manage the pain better (in my own head) - whilst I found/find the frequency aspect very distressing and harder to cope with.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 41 CPPS: 7 Yrs Recovery Status: 90% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation, Tramadol (50mg)

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