The Coming Debate Over Treatment

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webslave
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The Coming Debate Over Treatment

Post by webslave »

The looming debate in the word of male and female pelvic pain is who should be treating us a patient group: urologists (surgeons) on the one hand, or physiotherapists (PTs) and psychologists/psychiatrists on the other.

Urologists have been largely unsuccessful in treating this malady. Just look at the polls we ran on the topic: the vast majority of men are very unhappy with the care they received for this ailment from their urologists. They have failed to cure us, to be blunt. Yes, quercetin was a step forward for many, but it only relieves pain, when it works, without getting to the cause of the problem (but see caveat below).

My best guess is that the cause of chronic pelvic pain is either pelvic myoneuropathy (muscle spasm exciting nerves that activate mast cells), or neuronal windup and central sensitization (see diagram below), or a combination of the two. Neuronal windup can take place as a result of, say, a prostate/bladder infection. The pain of that can set off a central sensitization. That sensitization cannot be relieved unless the pain feedback cycle is broken by (and here is the quercetin caveat) an agent that relieves the pain: tramadol, quercetin, heat, time itself, and anything that protects mast cells, and even (and this is where it gets confusing), something like pelvic floor massage, which could interfere with and help break the feedback loop even without muscle spasm being present!

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If indeed muscle spasm is present, we need psychologists like David Wise (an ex-sufferer himself) to help us relax with concepts like Paradoxical Relaxation. We are an anxious bunch, for the most part. We do suffer a lot of stress and tension. This has been well documented, even by urologists, who see us as a very difficult group to treat, psychologically as well as medically. We always thought this was the "blame the patient" syndrome on their part, but they are correct inasmuch as we do, as a group, seem to be more prone to anxiety disorders, panic attacks and stress than the average person. And we need psychiatrists or our family MD so that we can get access to all medications that seem to help us, including muscle-relaxing benzos like Valium.

So the debate is just now getting underway. It's high time. The answer will become apparent in the next few years. Either urologists will win the day if something like a low temperature invasive procedure helps (WIT, TUMT), or the PT/psychologist camp will win out, leaving urologists the simple task of referring patients on. Or maybe a win-win situation will arise, if both camps have something to offer.

One of the ironies of all this is that the old sitz bath, recommended by urologists in days of yore and much derided by patients as a sign of urologists not knowing anything, has made a comeback. The other irony is that the old school urologist who would refer "prostatodynia" patients on to a psychiatrist was probably doing the right thing after all!
Last edited by webslave on Wed Oct 20, 2004 4:16 pm, edited 1 time in total.
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alprost
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Re: The Coming Debate Over Treatment

Post by alprost »

Very interesting points, Mark.
webslave wrote:The looming debate in the word of male and female pelvic pain is who should be treating us a patient group: urologists (surgeons) on the one hand, or physiotherapists (PTs) and psychologists/psychiatrists on the other.
I don'y think it is an 'either or' question. The more I learn about CPPS and it's various triggers in different people, the more I realise how complex some cases can be. I think the way forward for these conditions is an integrated; systematic and multidisciplinary approach which is holistic in nature,which may include diagnotsic procedures and treatment from all of the above, and also possibly a pain specialist, but which is specifically tailored to each individual case.

This is already the apprach taken by the Stanford team and also by Dr Shoskes's clinic - I suppose the key question may be who co-ordinates and directs the treatment strategy, and that's a difficult one!!!

I do think the key thing we need to aim for from Urologists in the short term, is that they either screen patients for pelvic floor muscles spasm, or refer the patient on to someone who can do this.
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
one day...

Post by one day... »

Very interesting post! I had posted a while ago that we hated uro's for telling us that it's in our head. then I noticed over time, that they were probably right.... atleast partly. Meaning, I think that's what got the vast majority of us in the condition we are in. However I dont believe the disease can be cured by treating anxiety alone. The word cure is something I believe is something that none of us should ever use. we will all get much better, but like an addict, we will all, alway's have CPPS, just waiting for us to let our guard down, and come back.I know that in the next few years... or even sooner, we will all get much better do to... well, this forum probably, wich probably will never be mentioned mainstream. The uro's, shrink's, and therapist will get all the credit. They won't know of the devotion of people like, Webslave, Alprost, MS, Mast cell's, Scotsman, and countless other's who made this there life. :x I thank you from the bottom of my heart for what you have done. This place is where the help is. Thomas
tractor316

Post by tractor316 »

Thomas I concur with you . well said . I can honestly say this web site has helped save lives . People that have this confusing condition are at there wits end by the time they find this Web site . Keep up the good work on this web site everyone .....
fecklesscuckold

Uro vs Psych

Post by fecklesscuckold »

We are an anxious bunch, for the most part. We do suffer a lot of stress and tension. This has been well documented, even by urologists, who see us as a very difficult group to treat, psychologically as well as medically
THis is an interesting correlation. I also suffer from panic disorder--some might even call me a recovering agoraphobic, as I once was terrified to go outside of my house. Speaking about the psych/nuero connection to this condition, I recently realized that it has been 3 YEARS since I first had my pain--and that was a shock to me. A real eye-opener. It made me angry that I've had to endure this for so long. So much a shock that I have been telling myself, with mild success so far, NO everytime the pain starts to come on. I did also notice that the condition resurfaced dramatically when living with my mother in law for a short time (my wife and I were in between houses).

I'm going to experiment with this "technique" as well as my usual meds and get back to everyone.

feckless
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Re: The Coming Debate Over Treatment

Post by Billy Davis »

Webslave, that is a good theory on downstream events however, working on the "body is orchestra" concept, isn't the true focus at the brain level and the chronic, subconscience misinterpretation of stress?

One of the most attractive aspects of the Stanford approach would seem the undertaking of reshaping of thoughts and emotions on this level. No doubt it's a major challenge and committment to integrate this level of therapy into our *normal* lives. Dr. Wise is able to bathe in this approach day in and day out. Earning a living and survival in today's society is stressful by definition. However, it's certainly worth the time and effort - positive implications could stretch well beyond the scope of CPPS.
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Post by webslave »

Continuing the theme of questioning who should be treating men with pelvic pain, this quote is very interesting:
John D. Loeser, MD wrote:"Chronic pain care in America today is driven by revenue more than any other single activity. This distorts the kind of care people get... because we lack good outcomes data, we look at short-term outcomes for chronic problems, and we have a bizarre remuneration system for physicians that puts a huge bonus on doing things that are categorizable as interventions instead of non-interventive activities," Dr. Loeser explained.
From Urology Times
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Re: The Coming Debate Over Treatment

Post by jm8911 »

Two of the most vexing things about this disease are 1) it manifests itself in many ways, many of which mimic other diseases. It will be difficult to have a "gold standard" treatment when the symptoms are so diverse. 2) there is no definitive test to diagnose it. It seems we will always be guessing what caused it and exactly what the root cause is, making it easier to question if it really is all in our heads.

While I do hope for advances in research that can answer these questions, most of the time I just wish the pain would go away by itself:)
Age: 51 | Onset Age: 40 | Symptoms: Chronic Epididymitis , Perineal Pain | Helped By: Ibuprophin | Worsened By: Sitting
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Re: The Coming Debate Over Treatment

Post by jVan »

The growing body of work seems to reveal that CPPS is heterogenous in original, and comes from a fairly unique etiology in each patient. I think this article is heading in the right direction. Its a polygenetic disease of highly variable severity, and treatment in the future should be tailor to a patient's specific pathophysiology. I got a Pdf from my school database, and I recommend obtaining the full version. Very convincing.
J Urol. 2009 Apr;181(4):1550-7. Epub 2009 Feb 23.
Genetics and phenotyping of urological chronic pelvic pain syndrome.
Dimitrakov J, Guthrie D.
George O'Brien Center for Urological Diseases Research, Harvard Medical School and Children's Hospital Boston, Boston, Massachusetts, USA.

Abstract
PURPOSE: Interstitial cystitis/painful bladder syndrome and chronic prostatitis/chronic pelvic pain syndrome, collectively renamed urological chronic pelvic pain syndromes, are a group of medically unexplained physical symptoms. Diagnosis depends on excluding all possible causes of pain and treatment targets symptoms alone. An emerging body of research implicates systemic factors in the pathogenesis of urological chronic pelvic pain syndromes including abnormal sympathetic nervous system and hypothalamic-pituitary-adrenal axis activity. Several new lines of evidence also suggest a genetic component to disease pathogenesis. Despite ongoing efforts, neither effective treatments nor mechanistic understanding of the pathogenesis of urological chronic pelvic pain syndromes exists.

MATERIALS AND METHODS: We performed a survey of the available literature on urological chronic pelvic pain syndromes. We reviewed recent research implicating genetic mechanisms in the development of urological chronic pelvic pain syndromes to find a systematic approach of rigorous phenotyping on which to base further investigation of these chronic pain conditions.

RESULTS: Three studies revealed identifying genetic risk factors for disease. In addition, increasing lines of evidence of familial clustering and twin studies suggested a genetic basis for disease.

CONCLUSIONS: Given the success of genome-wide association studies in quantifying genetic risk in several polygenic diseases, we suggest a similar genome-wide approach to the study of urological chronic pelvic pain syndromes. As genome-wide association studies depend on carefully defined patient populations, we provide an outline for a thorough and multidisciplinary characterization of patient phenotypes. Although urological chronic pelvic pain syndromes continue to mystify clinicians and researchers alike, we believe the powerful new methods of unbiased interrogation of the whole genome based on systematically grouped patients possess enormous potential for progress in treating and understanding this disease.
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Re: The Coming Debate Over Treatment

Post by mchenlo »

Although late, this is a great debate. I really concord with the idea that this forum is probably the best source of info. I have found so far. It provides a lot of encouragement and COACHING. I was almost ready for surgery. Thanks WebSlave!
Age: 52 | Onset Age: 50 | Symptoms: current S(groin,leg,pubic pain); occasional body aches | Helped By: hot/cold showers; yoga; pelvic massage | Worsened By: sex more than once a week
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Re: The Coming Debate Over Treatment

Post by snowbro »

Hi again, fantastic information on this forum. Easily the best collection of CPPS information on the internet.

Here I am, a physician myself, and it took awhile to get a grasp of my diagnosis. Initially with symptoms of urethritis, left epididymitis, then bacterial prostatitis, and finally the CPPS type symptoms 2 weeks later. I have since gone through the gamut of tests, treatments, etc, and only now do I realize there is NO residual infection whatsoever, however it may be that the "memory" of that "sentinel" incident created this whole scenario as webslave outlined above. I also had a right inguinal hernia repair with mesh 2 months prior to my symptoms, this may or may not be related, however it could have only ADDED to pelvic muscle tension/contraction. Pelvic floor myoneuropathy or nerve sensitization or a combination of both seem to be the culprits in CPPS, and add on psychological/anxiety type conditions as a tertiary component.

Regarding the genetic component, this is CLEARLY a genetic phenomenon as well. I found out my own little brother had symptoms of CPPS for 2 years before they resolved on their own. He did the same thing as me, multiple tests, all normal. His symptoms apparently started after he interrupted ejaculation during masturbation (the "sentinel event" so to speak). Who knows, but that was the event he remembers as being the most directly associated with the start of his problems. My brother is not medically inclined, and suffered through his symptoms internally after modern medicine failed him completely. I showed him the wiki on CPPS and he immediately recognized that he had had CPPS and was never properly diagnosed. He now has a different type of syndrome, more like IBS, so I believe that IC, CPPS and IBS all share similar pathways, especially with regards to the psychological/anxiety component.

I am going to be doing yoga, seeing a pelvic floor physiotherapist and also doing a caudal nerve block. I will report back with the results. I have also started taking any accredited quercetin product and L-theanine. Just understanding the above, and dealing with the anxiety of the above has definitely offered moderate relief, however I do not believe this is an "only in your head" phenomenon. Like all diseases, there is a psycho-somatic component. Anyone who has some understanding in psychoneuroendoimmunophysiology will know the phrase "everything does everything, everywhere" in the body.

I hope I can create my own success story so that I can finally re-educate all the doctors I have been in contact with. Not a single one has had any understanding of this disease.
Age: 34| Onset Age: 33| Symptoms: waxing and waning pelvic, perineal, and urethral pain, occasional urgency| Helped By: massage/distraction/exercise/sex | Worsened By: stress/sitting| Other comments: I am a physician trying to solve this problem in a systematic fashion
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Re: The Coming Debate Over Treatment

Post by critthinker »

Snowbro, your case is very much like mine. Mine started with bacterial prostatitis along with epididimo-orchitis that resolved only to take on a life of its own after successful antibiotic treatment. You are NOT alone.
Age: 27 | Onset Age: 26 | Symptoms: Pelvic pain (began w/ introduction into bladder/prostate of highly resistant strain of bacteria that was acquired via a Botox injection intended to treat levator ani syndrome) | Helped By: Paxil for anxiety, Trigger point release and trigger point injections, stretches, hot baths, Prosta-Q | Worsened By: Stress/anxiety, Sitting down for long periods,
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Re: The Coming Debate Over Treatment

Post by European »

Interesting reading, I can agree with most of the texts above. CPPS is clearly multidimensional enemy with various clinical manifestations and diffuse clinical pictures. Exactly this diffuse nature is what is making a kind of distrust between the doctor (mainly urologist) and the patient..helplessness and (maybe) apathy on both ends...A tremendous effort has been made by patients advocates like webslave and of course many intelligent doctors and researchers...we have to implement some "middle range bridge" between old obsolete urologistic thinking (honour to exceptions) and new participatory treatment which is viewing this condition as psychoneuromuscular disorder...
Age: 41 | Onset Age: 36 | Symptoms: Chronic pain in the penis, groin, pubic area and pelvic muscles, mainly ischiocavernosus area | Helped By: Elavil, PT | Worsened By: Stress, ejaculation, depression | Other comments:
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