Jay's FAQ - Updated 12/31/2009

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Jay
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Jay's FAQ - Updated 12/31/2009

Post by Jay » Sun Jun 01, 2008 11:08 pm

(Updated 12/31/2009 - Clarifications, grammatical and spelling tweaks. Happy New Year!)

CHRONIC PELVIC PAIN - FREQUENTLY ASKED QUESTIONS

This FAQ is intended to address some of the most common questions presented on the forums. Before you post, please give the following a quick read and see if it helps you at all.

As always, any information presented here is not to be taken as official medical advice. We are not doctors and cannot diagnose you. Please consult with your physician.


GENERAL

Q: What is Chronic Pelvic Pain Syndrome?

A: Chronic Pelvic Pain Syndrome (CPPS) has been around for a long time. You may know it by one of its older names, such as Chronic Nonbacterial Prostatitis. The name for this syndrome changed as it became accepted that prostatic inflammation was a symptom in the vast majority of patients, rather than the cause. As well, women were found to be suffering from virtually identical pelvic pain, yet they lack prostates.

This is a very common syndrome. Studies estimate that around 10% of men in the United States suffer from CPPS, and the majority of urologist appointments every year are made by patients with this diagnosis. Unfortunately, for being such a common issue, CPPS receives an unusually low amount of funding and research. There are some urologists who have a dedicated interest in piecing the CPPS puzzle together, but many are content to simply lag behind due to a lack of profitability. Interest within the medical community is gradually increasing as times change and new researchers enter the arena.

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Q: What are the symptoms of Chronic Pelvic Pain Syndrome?

A: The symptoms of CPPS are highly variable. Put two sufferers together, and chances are good that they will have both similar and different issues. The one common link is pain somewhere in the pelvic region. You cannot have a pain syndrome in the absence of pain, after all.

Some common symptoms include burning pain, shooting pain, sharp pain, stabbing pain, nerve-like pain, twinges, aches, tightness and spasms. Heightened pain often occurs during, prior to and/or following defecation, ejaculation or urination. Some patients may have urinary frequency or urgency. Allodynia, usually presenting as pain or sensitivity on the skin, is not unheard of. Due to a phenomenon known as nerve cross talk, you may also experience pain radiating elsewhere.

Sites for these symptoms can be throughout the pelvic area. Common problem spots are the tip and/or shaft of the penis, the urethra, the testicles/scrotum, the perineum (area between the anus and the testicles), the rectum, the coccyx (tailbone), and the suprapubic region. Sufferers experiencing radiating pain may find that it extends downward into the legs and feet, or upward into the abdomen and lower back.

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Q: I am having (insert symptom). Is this normal?

A: Because CPPS is such a variable condition and can resemble so many other problems, it is difficult to say whether any one symptom is "normal." We strongly emphasize that you should consult with your physician before deciding to pursue the methods and theories discussed on our site. Return if and when you have a CPPS diagnosis. You might have something else that can be easily remedied!


CAUSES


Q: What is this site's position on the cause of Chronic Pelvic Pain Syndrome?

A: We acknowledge that there may be variety of hypothetical causes for CPPS. For the majority of sufferers, however, our belief is that they are suffering from pelvic myoneuropathy (myo = muscles, neuro = nerves, pathy = disease). We have a section on chronicprostatitis.com which elaborates on this phenomenon in great detail.

In short, pelvic myoneuropathy is a problem rooted in the muscles and nerves. It might be caused by something like anxiety, physical trauma or stress. Whatever sets it off, the end result is that the sufferer develops a chronic pattern of holding and tension in the pelvic floor. This serves to aggravate the nervous system and inflame the tissues in the region. Combined with longstanding restriction and tightness, pain and other symptoms are inevitable.

Many sufferers of pelvic myoneuropathy tend to develop "knots" in the pelvic floor musculature, which are known as trigger points. These points can refer symptoms all over the pelvic region, and they don't necessarily have to be located near where you're feeling pain. For example, you might press a trigger point near the back of the pelvic floor and have it cause pain at the tip of the penis. Trigger points can be as large as a snow pea, or as small as a grain of sand, which means a trained physical therapist with experienced hands is often required to detect them.

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Q: Your position sounds a bit out there to me. What proof do you have?

A: Read the success stories on the site and you'll probably be satisfied. Countless men who were once hopeless have gotten their lives back as a result of specialized physical therapy, relaxation techniques and sometimes medication.

Pelvic myoneuropathy is gaining ground as an etiology of CPPS, even in the world of urology. Successful clinical studies conducted for the Wise-Anderson Protocol, currently the foremost method of treatment involving our position, have been published in the highly respected Journal of Urology. Stanford University's department of urology is involved in the Protocol, and they certainly would not waste their time on quackery.

The existence of trigger points can be empirically verified. Specially trained physical therapists are able to locate and palpate these points in the tissue of the pelvic floor. As well, it has been discovered that trigger points are sites of heightened and measurable electrical activity.


BACTERIA AND OTHER THEORIES

Q: My doctor gave me antibiotics for my CPPS. Don't I have an infection?

A: Maybe, but most likely not. There are types of prostatitis which do involve infection. Acute prostatitis is one example, and some guys have chronic infections due to anatomical or other issues. These people are in the minority, however.

The majority of people diagnosed with CPPS never culture any sort of significant bacteria, whether in the urine or in prostatic secretions. The tendency for physicians to prescribe antibiotics in these patients is increasingly regarded as outdated. Some do it because they still cling to the bacterial idea, while others throw antibiotics at you as a method of appeasement. Either way, they usually don't resolve the issue. What's more, carelessly prolonged use of this type of medication can be harmful in a number of ways.

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Q: My doctor found Staph and/or white blood cells. That's proof of an infection!

A: Not necessarily so. There is such a thing as Staph infection, yes, but Staph also colonizes the body naturally and never causes problems. White blood cells are present in the secretions of many guys and are usually a sign of inflammation, rather than infection.

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Q: My antibiotics made me feel better. That proves it was an infection, doesn't it?

A: Unless you cultured positively for an infection, probably not! Certain antibiotics (Cipro, Levaquin, etc) have been found to possess complex and potent anti-inflammatory qualities. This would ease your pain on a temporary basis. Unfortunately, such periods of relief mislead people into thinking they have an infection, and they go on taking these medications for months or even years. This is very dangerous, as it wipes out the patient's gut flora and promotes antibiotic resistance. That's setting aside the very dangerous side effects certain types of antibiotics (esp. Quinolones) may cause when taken on a long term basis.

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Q: What about nanobacteria? I've read something about that.

A: This theory proposes that there are undiscovered "stealth" bacteria causing our symptoms. The idea is that this bacteria is small enough to have escaped the notice of current detection methods. It should be emphasized that the very existence of nanobacteria is hotly debated, much less its involvement in our syndrome. As such, this idea isn't often discussed on the forums.

Dr. Shoskes, a urologist/researcher who frequents our forums, has been involved in pursuing the idea of nanobacteria for CPPS.

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Q: Calcifications have been found in my prostate. Could these be causing my symptoms?

A: Probably not. Most men have some calcifications/stones in the prostate, especially as they age. Techniques used to break up these deposits have not seen much success with regard to relieving CPPS.

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Q: Can prostatic injections result in a cure for my CPPS?

A: A few participants in our forums have reported success with prostatic injections conducted in the United States. That said, others have experienced opposite results. Prostatic injections tend to contain powerful steroids which would hammer any sort of local inflammation into submission. This merely masks the symptoms, which are likely to return once the effects of the injection fade. Steroids have a detrimental effect on the body, and we do not recommend that everyone rush off to receive this sort of treatment.

Anyone intent upon receiving these injections is urged to have them done in the United States, where you are protected by health and safety laws. A group of patients visited China in '08 to receive injections from a Doctor Song, and some of them returned home with Hepatitis C. They are now suffering with even worse problems than they'd had. Don't take the risk!

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Q: Could my pudendal nerve be entrapped (PNE)?

A: This theory posits that the pudendal nerve (which innervates portions of the genitals/rectum/perineum) may be entrapped by compression or ligaments, similar to carpal tunnel. We are strongly against the idea of Pudendal Nerve Entrapment as a cause for CPPS. Our sole exception is for the most obvious cases, which would include pain only when and immediately upon sitting, and numbness.

PNE can result from congenital malformations or physical trauma, but it remains extremely rare and highly controversial in the world of medicine. Most doctors don't know about it, and those that do tend to view the decompression surgery as very hazardous and "routinely unsuccessful." Top of the line medical centers like Mayo and Stanford stopped doing the procedure, reportedly due to poor outcomes. Indeed, reading around will turn up many stories of patients being worse off.

Many proposed symptoms of PNE exist in pelvic myoneuropathy. The majority of guys find relief with conservative treatments like ours, or even less invasive medical procedures. Please, do not rush off to get PNE surgery!


TREATMENT

We should preface this section by stating that one size does not fit all. Most guys will succeed with the methods we suggest, but some will not. Again, please only pursue our ideas after you have undergone a thorough medical evaluation for other causes.

Q: What should I do first in order to begin treating my problem?

A: First and foremost, it is important to realize that our method is a slow fix, not a quick one. Resolution of your symptoms may not occur until months or years down the line. You should thoroughly review chronicprostatitis.com, and read A Headache in the Pelvis, published by Dr. Wise and Dr. Anderson. You can get the book either on Amazon.com or at your local bookstore (I bought my copies at Borders). This should provide you with an excellent idea of how the muscles, mind and nervous system all combine to create CPPS.

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Q: Which part of the treatment is more important, physical therapy or relaxation?

A: This can vary, but most guys find that both aspects are essential to their recovery. The physical therapy directly addresses the muscular issues and pain. Relaxation helps you to prevent those issues from returning, and also assists in calming the nervous system, which is measurably agitated when we are anxious and in pain.

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Q: How does the physical therapy work?

A: The most successful type of physical therapy for CPPS is called myofascial trigger point release. This technique addresses muscular dysfunction, as well as the trigger points which so often refer pain throughout the pelvis. A trained hand is able to carefully locate these trigger points, which can be external or internal (rectal), at which point they are compressed until they "release" from their bound-up state. The therapy may also involve lengthening chronically shortened/tightened muscle in other ways, as well as treating issues of tertiary concern, such as pelvic misalignment.

Physical therapy for CPPS a complex process which demands commitment and knowledge on the part of patient and therapist alike. Resolution of symptoms is often a long term achievement, and there will be bumps in the road.

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Q: How can I find the right type of physical therapist for my condition?

A: Finding someone skilled in myofascial trigger point release of the pelvic floor can be difficult. You should first consult the list of suggested therapists on our forums. If none of them are near you, travel may be required. Your best bet could be to contact PTs who are known to treat female pelvic pain, a population in which the approach is better established. There's a good chance that they'll be willing to either help you, or guide you to a practitioner who can. You want to make sure that you get someone familiar with treating pelvic pain, not just incontinence.

Failing all else, or if you have the money to spare, a Wise-Anderson Protocol clinic is hosted monthly in California. It's expensive, but their clinic is widely regarded as the best location to be treated at. You receive a urologic examination at Stanford University, and you then head to the clinic. There, your trigger points are mapped and addressed by Tim Sawyer (a superb PT for CPPS), and you are taught to self-treat them. Dr. Wise, a recovered sufferer himself, also educates you in valuable relaxation techniques to help you control anxiety and pain.


PSYCHOLOGY

Q: My doctor said this is all in my head (or insert offensive diagnosis). Is that true?

A: Most of the men here have been told that, and a lot of other absurd/cruel things. It's an unfair answer, and it's not true in the sense that you're "imagining" the pain. The pain is real. That said, many guys here do have things like Generalized Anxiety Disorder. These conditions, which are quite treatable, can exacerbate your pain by promoting the cycle of tension.

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Q: What is Generalized Anxiety Disorder?

A: Generalized Anxiety Disorder (GAD) is probably the most common psychological malady seen on our forums. People with this disorder are chronically anxious and worried. You may find that you have difficulty ignoring things others would easily shake off, or you might just be constantly nervous. Generalized Anxiety Disorder (GAD) is important for CPPS'ers to recognize in themselves, because it is known to be a direct contributor to muscle tension and other physical problems. Quite a few men report battles with anxiety which predate the full onset of their CPPS.

Understand that having Generalized Anxiety Disorder (GAD) does not mean that you are "crazy," and you should not feel ashamed about seeking psychological help. This disorder, a common comorbity of CPPS, is highly treatable. Getting a handle on it can result in marked improvement.

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Q: What if <insert negative event> happens? I can't stop thinking about it!

A: The what-ifs plague most of us, including yours truly. We call it catastrophic thinking around here. When you're engaged in this sort of thinking, you take your existing symptoms and imagine their worst possible outcome. You might imagine that you'll end up entirely debilitated, suicidal, or the victim of some terrible (and usually highly unlikely) health condition. Catastrophic thinking is a dangerous trap, as the mind finds ways to convince itself of the worst outcome, even if it has only vague reasons to go on. It's important that you fight it.

First, you should remind yourself that catastrophic thoughts are generally unrealistic and untrue. They offer you nothing save for heightened anxiety, depression and fear. When you have a thought like this, counter it by acknowledging that you have no reason to believe these things will happen. It's also important that you learn to live in the moment, and not in the future. Could these terrible things happen? Yes, in the same way that I could sprout wings and fly, but probably won't. You're building tension and wasting a lot of good time by worrying when that stuff may not even come to pass.

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Q: I am terribly depressed about my CPPS. I don't think I'll ever be better again, only worse.

A: This is another common concern, and it's a tough one. The onset of this condition is emotionally and physically taxing. The mental burden can sabotage your recovery efforts. At some point, however, you have to pick yourself up and do what it takes to improve. It won't be an easy battle, and the setbacks you experience along the way will be hard to cope with. The fact is, though, the majority of people on these boards do get better and move on with their lives. We have the success stories to prove it! Stay hopeful, follow the protocol, and just keep at it. Ask for support when you need it, and remember that there is always an answer. Even if it comes down to pain management, you can be helped.

If your depression is so deep that it's interfering with your life, or if you worry about becoming suicidal, then please seek professional psychological help. We are not an appropriate source of assistance for people in such dire straits. You can pull yourself out of that hole with proper counseling and medication, and you'll feel much better for having done so. This syndrome, which so many people have defeated in time, is absolutely not worth ending your own life over.


OTHER QUESTIONS

Q: Can I have surgery to correct my problem?

A: There are sometimes good reasons for surgery, but it is generally ill advised in men with CPPS. Unless there is clear justification, we advise that you attempt more conservative measures before resorting to the knife. One good example of a worthwhile surgery is stricture repair, since urethral strictures can be very problematic for the urinary tract. Treatments like nerve blocks and Botox, while not technically surgeries, are still procedures which carry risks worth examining.

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Q: What about herbal remedies like Prosta-Q? Are these at all worthwhile?

A: Herbals like Prosta-Q do not fix the problem on their own (wouldn't that be nice?), but they have provided significant relief to some. Natural substances like quercetin have been shown to reduce inflammation and tone down the symptoms of men suffering with CPPS. It can't hurt to try it, though a certain percentage of guys do not see benefits due to genetic differences.
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.

kevin
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Re: Jay's FAQ - Updated 6/2/2008

Post by kevin » Wed Jun 04, 2008 7:00 am

Excellent post, Jay!
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy and mild dribbling after urination; pubic/prostate/perineal discomfort; Helped by: Afrin nasal spray, Cymbalta (these meds help me if taken 3 days straight), hydrocodone (small doses), distraction, eliminating wheat/gluten from diet. Makes worse: sex.
Your question has probably come up before. Please use the search function.
Not medical advice. Consult your doctor.

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