Fully Integrated Approach to Treating PM

[webslave]

As far as I know, none of the centers that treat PM do so in a fully integrated way. Some centers are excellent at treating the myofascial aspect (e.g. Stanford), but they do not maximize success rates by including phytotherapy, nerve treatments, muscle relaxants, a-blockers and more into their approaches. Other centers and other doctors rely more on one or other mode of treatment. Sadly, most still just throw antibiotics at the problem.

As far as I can see, nobody is really treating pelvic myoneurpathy with a fully integrated approach, using all available treatments to boost outcomes. Dr Shoskes perhaps comes closest to this ideal, because he really does try a broad range of options.

Eventually, let's hope we see an integrated, all-barrels-blazing :2gunsfiring_v1: protocol available all over the world to every man who suffers this malady.

[alprost]

I agree fully with your concept of an individually tailored, fully integrated treatment approach, and also belive it would benefit many men.

I also think Jerome Weiss has an integrated approach - Some quotes:

- We must calm not only the bladder, the pelvic floor and surrounding pelvic muscles but we must also calm the mind, pay attention to sleep and diet and activities.
- When found, (trigger points) are eradicated with the use of manual therapy techniques of stretching, compression and sometimes injecting trigger points with anesthetic agents. In addition, muscle function of contraction and relaxation is evaluated...These latter problems are treated using biofeedback and Kegel instructions for both strengthening and relaxation.
- I also don't want leave out bladder therapies to calm the input from the bladder, such as tricyclics antidepressants, Elmiron etc.

i agree with your comment about Dr. Shoskes. I remember Rhemium one made a very perceptive comment when someone on the Usnet group stated that any urologist could do what Dr Shoskes did. Rehmiums reply was that yes they could follow his approach and offer the same therapies, but the point is that they don't.

[Richard.N]

Some centers are excellent at treating the myofascial aspect (e.g. Stanford), but they do not maximize success rates by including phytotherapy, nerve treatments, muscle relaxants, a-blockers and more into their approaches.

From my reading of THE BOOK, Stanford doesn't see other treatments as being synergistic, in fact the implication appears to be that other treatments may hinder the protocol. What we need to know is whether the synergistic approach does work better than the Stanford/Wise-Anderson Protocol alone. Stanford says it doesn't.

We can't just assume that synergy will maximise success rates as much as we can't assume Stanford alone is THE WAY.

If the Stanford/Wise-Anderson Protocol is THE WAY then eventually it's bye, bye abx, Elmiron, a-blockers, tricyclics, Quercetin, Algonot et al.

Incidentally, I'm sceptical of anything that doesn't come out of a bottle, I have very limited patience with exercise and I refuse to be positive for the sake of it (my brain isn't wired like that); so I'm not seeking to trash drug/supplement therapy

[alprost]

From my reading of THE BOOK, Stanford doesn't see other treatments as being synergistic, in fact the implication appears to be that other treatments may hinder the protocol. What we need to know is whether the synergistic approach does work better than the Stanford/Wise-Anderson Protocol alone. Stanford says it doesn't.

We can't just assume that synergy will maximise success rates as much as we can't assume Stanford alone is THE WAY.

If the Stanford/Wise-Anderson Protocol is THE WAY then eventually it's bye, bye abx, Elmiron, a-blockers, tricyclics, Quercetin, Algonot et al.

Incidentally, I'm sceptical of anything that doesn't come out of a bottle, I have very limited patience with exercise and I refuse to be positive for the sake of it (my brain isn't wired like that); so I'm not seeking to trash drug/supplement therapy

Yes, you are correct Richard - very good points. There is indeed a lot of research to be done before anyone will be able to answer the pertinant questions you have raised.

I suppose in the meantime the ideal (conservative?) approach might be to try an integrated and highly individualised programme such as that suggested by Dr Weiss, and adjust it according to results.

I'm the opposite of yourself - I am pigheaded and hate taking any medications as they all have some side effects. However, I'm not so pigheaded that I won't take them if I really do need them, hence my current approach!

[Richard.N]

Absolutely Al! I'm not ready to take the leap of faith and cut out the meds, but I don't mind absorbing MFR into my regime.

[alprost]

but I don't mind absorbing MFR into my regime.

I was very lucky to find a good physio which enabled me to do this - Let's hope you too have some luck in this department.

[Richard.N]

I was very lucky to find a good physio which enabled me to do this - Let's hope you too have some luck in this department.

I'm feeling significantly better after nearly two months of Elmiron so if I do have PFD and get MFR then it can only be a bonus

[TK]

From my reading of THE BOOK, Stanford doesn't see other treatments as being synergistic, in fact the implication appears to be that other treatments may hinder the protocol. What we need to know is whether the synergistic approach does work better than the Stanford/Wise-Anderson Protocol alone. Stanford says it doesn't.

We can't just assume that synergy will maximise success rates as much as we can't assume Stanford alone is THE WAY.

If the Stanford/Wise-Anderson Protocol is THE WAY then eventually it's bye, bye abx, Elmiron, a-blockers, tricyclics, Quercetin, Algonot et al.-D

It seems pretty well established that certain supplements and pharmaceuticals have been useful in treating the components of inflammation and neuropathy.

Maybe the people at Stanford are not entirely opposed to the use of these strategies.
It's clear why they would want prospective patients stop taking drugs/supplements of any kind prior to evaluation. And if you are trying to gather data that will validate a new approach to treatment, you don't want to muddy the waters with additional variables that might cast results in a less definite light..

Extrapolating from both personal experience and what others have written, I think that it would be a big mistake to discard the (judicious, individually-tailored) use of supplements and/.or pharmaceuticals to address inflammation and neuropathy.

I have no idea if true synergy occurs. But if, for example, it's proven that Supplement X inhibits the activity of Mast Cells, why not use it as an adjunct to physical therapy and skilled relaxation, etc.?

The Stanford approach is a great step forward. And a well-defined protocol does serve the purposes of research and providing the kind of clear evidence that will be persuasive to the larger medical community. But hopefully we will go down the road where we enshrine the "pure" protocol in ways that discourage the evolution of useful variants.

Many in this forum have reported positive results from approaches to "PM" that involved physical therapy and excercise, but differed in significant ways from the Stanford model. Worldwide, there are many physical therapists who have been carefully stretching pelvic floor musculature in treatment of incontinence, etc.

Do we want to promote an orthodox protocol, or are patients better served by a broader, more widely accessable model based on core principles and practical experience?

So -- with apologies to that odd couple, Mao Zedong and Charleton Heston --

Let a thousand flowers bloom!

You can take away my Algonot... when you pry it from my cold, dead hand!

[Richard.N]

Some great points there TK - and I don't disagree on the whole.

Maybe the people at Stanford are not entirely opposed to the use of these strategies

This I would be very interested to know. I have the wrong impression of the protocol if it isn't opposed to other strategies. I thought the implication was that it is a fully formed, independent strategy per se.

Would anyone else like to comment after reading the book? Or maybe one of the authors?

[alprost]

I'm feeling significantly better after nearly two months of Elmiron

Geat news!!!

[MS]

My impression is that the authors have indeed "cured" many patients from chronic pelvic pain, CP, PM, etc using their techniques; and I think that's great. IMO, Their protocol should be assimilated into other traditional approached to CPPS, and the general practitioner and traditional urologist should be aware of the Protocol.

With the exception of "skilled relaxation," my treatments are already similar to their protocol -- along with medications (Cardura, Hydroxyzine, Valium, Vioxx). I have been stretching the muscles groups they refer to with similar exercises (Piriformis, Adductors, Psoas, Quadratus Lumborum). I have had trigger point muscles injected with Procaine. I have had dry-needling to the trigger point muscles. And, I have had internal stretching of the Levator Ani. I have even had Botox injections to many of the above muscles (and the Pectinues and Obturator Internus). While my symptoms are far from gone, they have certainly improved noticeably. Is the skilled relaxation the "missing link?"

Maybe the people at Stanford are not entirely opposed to the use of these strategies.

This I would be very interested to know. I have the wrong impression of the protocol if it isn't opposed to other strategies. I thought the implication was that it is a fully formed, independent strategy per se.

Would anyone else like to comment after reading the book?

They do state that they are trying to change the way physicians and patients view CPP. They also mention the overall ineffectiveness of traditional medications/treatments of Chronic Nonbacterial Prostatitis (p. 80), and state the limited effectiveness of Alpha-blockers, benzodiazepines, and narcotics (p. 214).

My main problem with the book is the lack of scientific references. They mention previous studies, but fail to cite them.

Nonetheless, I applaud the authors for presenting their protocol. Perhaps it is the catalyst we need to get the traditional urologist away from throwing the "CPPS" label on anyone who has pelvic problems and a negative urine culture/DRE, and recognizing that there is a lot going on down there.

[jd]

Hey MS, I definitely think you should add Skilled Relaxation into your regimen. At the very minimum, there can be NO negative effects of doing this, only positive. And the thing with Skilled Relaxation, is there are a variety of ways you can go about getting in the textbook "relaxed state."(where your brainwaves are in the alpha/theta level). I suggest reading some of my posts throughout this site about my experiences with it. It has by far had more dynamic results for me for my IC/CPPS than any medicines I have taken, and continues to do so. I highly suggest Skilled Relaxation, once you truly learn to get into the Alpha/Theta state you will be realize how much tension is your body(including your Pelvic Region) that you had no idea is there.

Also, take a look at this

April 24, 2001
Guest Speaker: Dr. David Kaufman, Central Park Urology
Topic: IC, PFD & Heller work

<host> Greetings everyone and welcome. Tonight we welcome Dr. David Kaufman MD, an Assistant Professor of Clinical Urology at Columbia College of Physicians and Surgeons and an Attending Urologist at St. Luke's-Roosevelt Hospital in New York City. He is the director of Central Park Urologyand is the Medical Director of BioGenetics Corporation, a cryogenic sperm and embryo bank.

<host> Dr. Kaufman received his Bachelor of Science degree from the School of Biomedical Education at the City College of New York in 1980 and his medical degree from the State University of New York at Stony Brook in 1982. After serving a two-year surgical residency at the Mt. Sinai Hospital in New York City, he completed his Urology training in 1988 at Columbia Presbyterian Medical Center, also in New York. Following this, the Urology Section of the New York Academy of Medicine awarded him the "Valentine Fellowship" in Urological Research, which was completed at St. Luke's Roosevelt Hospital

<host> Dr. Kaufman served on the full time clinical faculty in the Department of Urology at St. Luke's-Roosevelt Hospital Center as the Director of the Male Infertility Unit and Pelvic Floor Rehabilitation Laboratory until 1998 after which he opened Central Park Urology for the private practice of Urology. Dr. Kaufman is a recognized authority on the evaluation and treatment of Interstitial Cystitis and directs a pelvic floor biofeedback and rehabilitation center in New York City.

<host> He currently serves on the medical advisory boards of the ICA and Alza Pharmaceuticals! Welcome Dr. K!

<DrK> Great to be here! Happy to spend some time speaking with you and the participants in this chat room.


----------------------Presentation Begins---------------------

<host> As we were talking on the phone a moment ago, you said that you had a great story about how you became interested in IC. Just how did you get involved?

<DrK> A good story! When I first finished my residency at Columbia Presbyterian Medical Center, I spent a year in fellowship, specializing in Male Infertility at Roosevelt Hospital. At the same time, as junior member of the faculty, I was referred the patients that no one else wanted to take care of (you all know where this is going).

<DrK> One young woman came to me with a typical story of what we now recognize as obvious IC symptoms, but remember, this was in the early 1990s! She complained of terrible urgency, frequency and pelvic pain. I was the 10th physician she contacted and others had told her the typical responses: her pants were too tight, too loose, too much sex, too little sex, etc. To make a long story short, I eventually made a diagnosis of IC, treated her successfully with compassionate use Elmiron.

<DrK> Well, it turned out that this young woman was an editor at SELF Magazine and wrote a story that was published in the December 1991 issue, called FIREWATER. In it she recounted her sad tale, and extolled the virtues of a young urologist, in NYC named......well, you guessed it. Anyway, when that article appeared in print, suddenly my waiting room was no longer filled with men carrying sterile containers holding a milky white fluid. I was literally beseiged with women from all over the world with symptoms of IC --- and that is how I got involved in the care and treatment of the IC patients.

<host> #1: You have mentioned that you are a strong advocate for pelvic floor work.. and, in particular, heller work. Do you feel that PFD is an underlying cause of irritation and pain in many icers??

<DrK> I was afraid you were going to ask me if PFD was a cause of IC and I don't know the answer to that. However, clearly PFD in and of itself can cause irritative voiding symptoms and certainly pelvic pain as manifested by dyspareunia (pain with sex).

<host> #2. How would a patient know if they have a pelvic floor problem??

<DrK> Let me first give a poignant example. There once was a time when IC patients were treated with cystectomy (bladder removal). We wondered why at least 50% of those patients would come back to us after surgery and despite no longer having a bladder, still complained of "bladder pain." We now understand that those patients were suffering from PFD in addition to their IC. They may also have difficulty voiding or emptying. People with PFD also have other pelvic floor issues such as constipation, difficulty initiating bowel movements, and sexual problems as well, such as difficulty reaching orgasm etc.

<DrK> To answer the question directly, the only way to really diagnose pfd, is by your physicians Physical Exam. I would recommend to Urologists that they adapt their physical exam to assess for the presence of PFD. This is really quite simple. After the bladder is palpated with the examining index finger through the vagina (i.e. this is for the female exam), the examining finger is swung to either side of the vaginal vault until the Levator muscle is felt running up and down through the vagina. If this muscle is felt gently in the exam, and lightly touched, a person with PFD will have a dramatic response- discomfort similar to the pain they feel in their pelvis during sex, etc.

<DrK> It is important to make this diagnosis, because to treat IC without recognizing the presence of PFD will lead to incomplete treatment of the patient. The irony is that if PFD is present, it is so simply treated with physical therapy, biofeedback and bodywork.

<host> Can you tell us about Heller work? I've never heard of this in conjunction with IC.

<DrK> Heller work is a discipline of myofascial release therapy with origins in California, I believe from the originators of the Rolfing technique of massage. The technique of Heller work uses deep tissue myofascial release. What is particularly striking in practitioners of Hellerwork is their training in Pelvic Floor musculature.

<DrK> I spent a good deal of time in NYC interviewing many disciplines of massage and physical therapy before finding a Hellerworker, who knew just what I was looking for, without ever really knowing anything about IC per se- she was perfect for me and my patient population. Needless to say, when I had her work on me (every scientist uses themselves as a laboratory model) she touched me in ways that I had never been touched before.

<DrK> She has been working with my patients for close to five years and has gotten near miraculous results with so many of them. I see Hellerwork as more of a short term fix for the pain and symptoms. I consider Biofeedback to be more of a long term solution.

<host> Kathy has the first question. She says that she recently started PFD therapy and that it has helped her pain but that her stress incontinence has gotten worse. Any ideas??

<DrK> PFD is a general term that refers to a "dysfunctional pelvic floor". The typical pattern in IC involves a high tone dysfunction (hyperactivity of the pelvic floor muscles) which follows the up-regulation of the spinal roots feeding back from the inflamed bladder. A weak pelvic floor is also a dysfunction, but not typically associated with IC. Patients with weak pelvic floors tend to have stress incontinence and the purpose of pelvic floor rehab (ie biofeedback) is to strengthen those muscles. In typical PFD with IC, the emphasis is on RELAXING the muscle groups- first by identifying them which can take weeks of training and then most importantly by learning to relax them

<host> Do you often find muscles knots or trigger points in IC patients?

<DrK> Yes and that is what the Hellerworker does best- by getting directly into those muscle groups that are knotted, deep in the pelvis and using release techniques to untie the knots. This sort of approach is not used by the typical "masseuse" with deep tissue training. There is great skill and training required to be able to find the deep muscle groups of the pelvis, access them directly and release them. Furthermore, there are other practitioners who actually access these muscles through intra vaginal approach but my group has not ventured there as of yet.

<host> Is there a list of practitioners on the web that practice Heller work that we can send people to???

<DrK>Yes, it is Hellerwork International and can be found at: http://www.hellerwork.com. Phone: 800-392-3900

<host> Our next question is from Melanie. She asks.. "Some icers sometime experience a tingling feeling in our bladders similar to the needles feeling if you had laid on your arm too long. Is that common of IC or PFD? What causes it?? What can we do to alleviate it?"

<DrK> That is not something that I have encountered but it certainly can be explained based on the aberrant nerve pathways that are "unmasked" with chronic bladder pain. The C and A delta pain fibers which are normally closed and only unmasked in the setting of chronic pain. It is conceivable that is what is happening with Melanie. How to fix it? I would definitely approach this problem with biofeedback and e-stim.

<host> Rickeysnanny says "Is it more or less likely to have PFD after a hysterectomy?"

<DrK> Interesting question but I don't think it is related to the surgery. The nerves involved in PFD go from bladder and pelvic floor to the spinal cord. I don't believe that these nerves are damaged in uterine surgery.

<host> Sonja asks "How can I get a doctor to take my IC seriously. Twice, I've been told to change my behavior but they have yet to give me any treatments?"

<DrK> You don't need to change your behavior, you just need to change your doctor! It is not 1990 anymore- there are doctors in every state in this country who are expert in IC and you need to find one of them.

<host> Kim asks "I've been diagnosed with IC and PFD. My urine is very acidic despite using tums and sodium bicarbonate. Ph of around 5. Could this be contributing to my pain?"

<DrK> We may be able to blame the acidity issue on the bladder pain but not to the pain from pelvic floor. How does one distinguish? Basically on physical exam- separating the bladder tenderness from the pelvic muscle tenderness. There is also the KCL stimulation test.

<host> Sharon asks "What can you suggest for patients who have very difficult night times and difficulty sleeping because of IC pain?"

<DrK> Again, we need to differentiate between bladder pain and PFD pain. Other than medications, there is not much more that can be done short term, if caused by PFD, the biofeedback sessions would teach relaxation exercises that could make a dramatic difference in pain levels. Start also with something simple like a warm bath- if muscular in origin.

<host> Andrea asks "Can diabetic nerve damage cause symptoms similar to IC, but not be IC?"

<DrK> Diabetic nerve damage classically involves destruction of the everyday nerves involved with bladder function. PFD is different, as alluded to earlier. We believe that PFD, again caused by chronic irritation of bladder nerve endings and upregulation to the spinal cord "reawakens" abberrant nerve pathways (which are normally shut down) which are only involved in the conduction of pain, urgency and discomfort.

<host> Jill S asks... Why is everyone so sure that IC is not bacterial related???

<DrK> I for one am not sure at all. In fact, it is my belief that in many cases, it is the chronic infection of low grade bacterial infections in many of our IC patients years before, that is responsible for the "epithelial wall defects (read GAG layer) that is directly responsible for IC.

<host> Hmmm... now that's going to stir some conversation online tonight! Folks.. I met Dr. K at the Bladder Conference last Fall... and just posted an article two nights ago on our site that talks about the new understanding of how e-coli may create deep, hidden infections that "seed" future infections. Any comments Dr. K?

<DrK> At the conference in Minnesota, a researcher presented compelling data, complete with electron micrographs, demonstrating the incorporation of bacterial organisms into the bladder wall through phagocytosis (in an animal model) which can be used as an explanation for why patients in their pre IC eras have symptoms of chronic UTI and negative cultures. Perhaps, the bacterial are no longer present in urine (which is what is cultured) and still remains within the bladder cell wall, secreting endotoxins, which continue to irritate and cause symptoms.

<DrK> Even going further out on a limb, these organisms may be responsible for the eventual bladder wall (read GAG) layer damage eventually seen in IC

<host> The slides in that seminar were awesome. They showed e-coli attaching to the bladder wall with little fingers (pilli) and then turning on end and burrowing into the bladder wall.

(I think we should insert something here about indiscriminate use of antibiotics. Would you mind doing another question after the fact???))

<host> What are your thoughts on the use of antibiotics to treat IC patients??? If the infection is embedded deep within the bladder wall, would antibiotics reach it?? (I'm referring to the fascinating world of delivering antibiotics deep into the tissues via electrophoresis. Do you remember the team from Italy who talked about how they had developed a more effective method of antibiotic delivery and how even the highest dosages of antibiotics wouldn't reach a deeper infection?)

<DrK> as a matter of course, I routinely will treat 1st time patients referred to me with a 1 months course of an antibiotic such as Macrobid, just to see if symptoms can be abatted. Mind you, if they respond to antibiotics, I would not consider that patient to have IC- perhaps a "prodromal" form of the disease (where the IC has not yet fully developed). I do remember the Italian group who were demonstrating their Physion device that uses electrical current to facilitate medication (such as antibiotics) to penetrate into the deeper layers of the bladder wall. I think that it is a fascinating concepts that needs to be further explored

<host> Sparky asks "Do you see a connection between back injuries and IC?"

<DrK> Sparky, I firmly believe that back injuries can be associated with PFD but it would be hard for me to explain the back injury being responsible for the bladder wall damage we associate with IC.

<host> Debbie says that she has severe IC with a small bladder capacity, severe irritable bowel syndrome, and that her belly is swollen to the size of a 5 month pregancy. She asks.. Am I alone?? Are they related?

<DrK> Debbie. I can think of a number of my patients in NY who have similar problems. We have clearly established a relationship (though we don't completely understand it) between IC and IBS. The bloating is related to the IBS. All these problems are connected neurologically and the relationship can be explained on that level.

<host> Any last words on IC??

<DrK> Though a potentially devastating disease, we have made such incredible progress in the last few years. The content of research reported on at our meetings have so dramatically improved within the past 3 years alone, that there is no doubt in my mind that a real long term solution to IC is just around the corner. So, to all of you who spent time with us this evening, and anyone else reading in the future, please remember to keep the faith, stay on course with your therapy, seek solutions, and remain open minded to the myriad possibilities out there. Thank you all- and good night!

----------------------Presentation Ends ---------------------

Contact Information:
Dr. David Kaufman
Central Park Urology
http://www.centralparkurology.com
210 Central Park South
New York, NY 10019
Phone: 212-969-9540

this Dr. runs a directs a pelvic floor biofeedback and rehabilitation center in New York City and really believes in Hellerwork.

Perhaps it could be good to incorporate both Hellerwork and Physical Therapy, in conjunction with Skilled Relaxation.

[MS]

Thanks jd!

I read the link you suggested, and I am very interested in Hellerwork. There is a practitioner right near my home.

I have tried skilled relaxation before, but I admit I did not really give it a fair chance. I also have a problem getting onto paradoxical relaxation, as desribed in the Stanford/Wise-Anderson Protocol. Nonetheless, I will re-try the skilled relaxation because I do believe that in my case I am being treated to the max on medication, PT, and supplements -- I need to focus on mentally calming down.

I'll keep you posted.
MS

[jd]

MS

I know how difficult it can be to learn skilled relaxation in this day and age of stimulation coming from every angle, thats why I think a CD that uses binaural beats, which basically guide your brainwaves into a relaxed state can be a good option.

Plus to get the full effects from these cd's, you are supposed to listen to them with stereo headphones(that completely cover your ear) on, which is good because it basically takes away noises that can distract you.

For me, the combination of listening to these cd's which are proven to relax you, in combination with deep breathing exercises constitute my Skilled Relaxation sessions.

It took me about 10 days to truly start relaxing during the sessions.

Personally, I prefer this cd to the Brainsync cd's

https://www.amazon.com/dp/B00000IXS0

because most of the Brainsync are guided meditation, and I prefer without voices.

But both use similar technologies. For me, this is the easiest way to go, I don't think I would have the patience to learn true meditation without headphones and practice it regularly. Way too easy to get distracted that way, at least for me, but it all depends on the person, and the important thing is whether or not you are truly in the relaxation state and practice it *regularly*.

For me, I am in the routine of doing it for 20 min when I wake up in the morning, and 20 min. after work. That is not difficult to do once you see some results.

[MS]

TK,

Thanks again for the advice. I purchased a copy of Theta Meditation System by Dr. Jeffrey Thompson, today, and look forward to attempting theta-pulse meditation. Perhaps this is my final step in overcoming chronic prostatitis / chronic pelvic pain syndrome -- calming the cycle of stress-->tension-->pain-->stress, etc. I'll keep you "posted."

Matt