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HEADACHE IN THE PELVIS"
An Introduction to a New Pelvic Pain Therapy Program for IC,
Vulvodynia and Other Related Conditions.
Speaker: Dr. Rodney Anderson, Professor of Urology, Stanford University,
Moderator: Jill Osborne, ICN Founder, Santa Rosa, CA
Date: July 8, 2003 - ICN Guest Lecture Series
- Welcome to the ICN Guest Lecture Series. My name is Jill Osborne and
I am the founder of the Interstitial Cystitis Network. It is my pleasure
to be your host and moderator tonight. One of our goals for this lecture
series is to bring the nations best resources directly into the homes
and offices of IC patients in need. We have welcomed many of the brightest
researchers and physicians in the IC world, in part to our sponsors, Farr
Laboratories (makers of CystaQ)
and Akpharma (makers of Prelief)..
Tonight, it my pleasure to welcome Dr. Rodney Anderson, Professor of Urology,
Stanford University School of Medicine
Anderson received his medical education and degree from The George Washington
University School of Medicine in Washington DC. He performed an internship
in internal medicine and then embarked upon a general surgery residency
at The University of Utah Medical Center in Salt Lake City. He then entered
the United States Air Force and performed as a flight surgeon and general
surgeon for two years. His urology specialty training began at Stanford
University Medical Center and, during this four-year period, he engaged
in basic laboratory research for one year as a National Institutes of
Health research fellow. Upon finishing his residency he was awarded the
American Urologic Association Wyland Leadbetter Research Scholarship and
studied prostatitis with Dr. Thomas A. Stamey, the chairman of urology
Anderson is currently professor of urology and practices at Stanford University
Medical Center as a partner in the female urology and neurourology Center.
His interest and expertise focuses on urinary incontinence disorders and
chronic pelvic pain syndromes. He conducts a regular weekly clinic devoted
to managing pelvic pain problems such as chronic prostatitis, interstitial
cystitis, orchalgia, prostatodynia, and vulvodynia. He is actively engaged
in clinical research trials of new drugs and medical devices to alleviate
problems of urinary incontinence, urinary obstruction with benign prostate
hyperplasia (BPH), and pelvic pain syndromes. He also directs a clinic
devoted to the problem of female sexual dysfunction.
Tonight, Dr. Anderson
comes to the ICN to discuss his ground breaking book "A Headache
In the Pelvis", co-authored with David Wise, Ph.D. This book has
received rave reviews from the medical community. It is the first of it's
type to document a successful and management pelvic pain reduction program.
Martin Schwartz, PhD, NYU School of Medicine said 'A Headache in the
Pelvis is a book which casts an entirely new light upon the serious problem
of chronic pelvic pain, and introduces a treatment that offers hope and
relief to the many who suffer from it. It is surely must reading for all
who must deal with this debilitating problem, as well as all who attempt
to treat it.' Erik Peper, Ph.D., Professor, Cal State Univ. San Francisco
said "This is the book to read before you contemplate surgery,
drugs or resign yourself to continue to suffer with chronic pelvic pain.
Return to health is possible. By transcending the simplistic mechanical
solutions, Drs. Wise and Anderson have developed an innovative clinical
protocol that works." It is a hallmark work for the IC, prostatitis
and chronic pelvic pain communities. Welcome Dr. Anderson!
- It's a pleasure to join this network.
Jill O. - Let's
begin with an important topic, the name of IC. Several years ago, when
the first meeting on prostatitis was held in Washington DC, a decision
was made to rename prostatitis as a "chronic pelvic pain syndrome."
Similarly, earlier this Spring, an international team of doctors discussing
new diagnostic criteria for IC also came to the same conclusion. They
also suggested that IC be renamed as a chronic pelvic pain syndrome. Why
now?? Why this new name??
- It's a pleasure to join this network. I was attending that meeting
and I think the good thing that came out of it was that we stopped trying
to slice and dice all the pain syndromes in the pelvis and that we acknowledge
that we don't have specific origins or causes and we don't have very
good biologic markers. So, this allows us to start fresh and look at
it as a total pain syndrome. I think that the trend will be that we
will say CPPS/IC/prostatitis... in other words, you will have various
subcategories of CPPS which simply means that it's more focused in or
around one of the pelvic organs...
Jill O. - What
are the names of the some of the other conditions that you believe are
also CPPS disorders??
- In men: non-bacterial prostatitis, isolated orchalgia, proctalgia.
In women, it can be vulvodynia, urethral syndrome. In both sexes, it
can be interstitial cystitis, levator ani syndrome (very tight muscles
around the rectum). There are also some cases of pudendal nerve entrapment,
which means that the nerve is being squeezed between ligaments and is
usually very painful with prolonged sitting and usually relieved by
Jill O. - What
are the common symptoms of someone with CPPS? Where does the pain occur?
- In men, pain occurs in the rectum & perineum, pain while sitting,
above the pubic bone (suprapubic) pain, pain in the penis (tip or urethra),
etc. Men will also have pain, discomfort, burning during urination,
urgency, nocturia. The most common symptom in IC for men is the suprapubic
pain. Women can have vaginal/vulvar pain, rectal pain, suprapubic, sitting
and clitoral pain. Pain may be higher during the menstrual cycle and
during stress. In both men and women, pain can be intermittent or constant.
Once again, most of the men have a lot of complaints with long term
sitting whereas many women will report pain after (or during) sexual
intercourse. Once again, most of the men have a lot of complaints with
long term sitting whereas many women will report pain after (or during)
Jill O. - Your
book is the first book to ever mention clitoral pain. We call this one
of the secrets of IC because patients often don't tell their providers
that they are having this painful arousal feeling, so thank you for legitimizing
that for us. I'm not sure of patients understand that pain in another
part of the pelvis can cause bladder symptoms. When a patient has pelvic
pain, can it change the way that we urinate??
- This is an important point. There are 27 muscles in and around
the bladder. Pelvis and mechanical back injury, which includes slipped
disks, can often cause a lot of pelvic organ pain and dysfunction. In
the bladder, it often can cause frequency, urgency, pressure, pain,
decrease in stream, incomplete emptying, etc. The whole gamut of bladder
symptoms can be caused by a problem outside of the bladder itself.
Jill O. - Can pelvic
pain impact our ability to have sex? If so, how??
- Yes... The concept of good sex is good relaxation. Pain causes
upregulation or tension.... and interference with relaxed sensory pathways.
It also inhibits a mans ability to get good erections. Usually, men
can also have painful ejaculation because the tone of the prostate and
pelvic muscles is abnormally high. One of the concepts of our books
is that pelvic pain syndrome is neurologically induced problem, possibly
leading to the inflammation in the bladder wall and surface or distortion
of the GAG layer. We are measuring elevated proteins, neuropeptides
in the urine, but the outcome of all of this still leads to pelvic muscular
tension. It's not the patient tensing their muscles... as much as
it is an unconscious tension going on
and it comes from the autonomic
nervous system. The classic dysfunction in women is vulvodynia where
they have pain with touching tissues and inflammation in the vaginal
tissues, which is very similar to IC and that is the most inhibiting
sexual dysfunction in women.
Jill O. - What
has lead you to believe that pelvic floor tension and tightness was a
primary source of pain in the pelvis???
- I want to credit my partner Dr. David Wise who brought this phenomenon
associated with CPPS to my attention and wanted to study it with me.
When we started actually looking for trigger points in the pelvis I
was amazed at how many of these were occurring outside of the bladder
and prostate and were definitely contributing to the whole syndrome.
I also want to give credit to Dr.
Jerome Weiss... who also pioneered a lot of this work with Rhonda
Kotarinos and Howard Glazer, in NY. They really are the ones that developed
the concept of the pelvic tension myalgia and the association it has
with IC and prostatitis.
Jill O. - What
did you usually find when you examined your pain patients?? It seems that
IC and prostatitis have more bladder symptoms than muscle symptoms. Could
the patient sense that they had muscle tension too??
- In women, we found that they have weakness in their pelvic muscles...
which is a paradox. You would think that they would have a lot of high
electrical energy but instead they have weak muscles and a poor ability
to sustain a kegel contraction. As we treated women with physiotherapy,
they could then begin to approach a more normal level of muscle function.
Men tend to have very high tone levels in and around their levator muscles.
This same phenomenon has been studied in people with migraine headaches
where they find these high tension trigger points and EMG in the shoulder
and upper neck muscles, which is why we called our book "A Headache
in the Pelvis."
Our basic premise
is that a lot of these painful syndromes represent neurobehavioral disorders
so that somehow the patients stress levels, their anxieties, stimulate
the autonomic nervous system and enhance this tension myalgia. It could
be either emotional or physical stress.... such as a bladder infection,
childbirth, hemorrhoid, uncomfortable sex, hernias. All types of events
that can trigger this upregulation of the nervous system, upregulation
meaning a hypersensitivity of the nervous system in the pelvis. Sometimes
we call this neuroma plasticity... that the nerves can be modulated
both up and down... depending upon stimulation or relaxation. That's
why, when we get frightened, or we are trying to run away from something,
we get all this great muscle activity and stimulation going on.
Jill O. - And,
yet, once the event has occurred, we would think that the initial injury
or muscle tension would resolve. In the book, you talk about how that
pelvic floor tension can become long term, almost a lifelong habit. That
over time, those muscles develop a predisposition to tension?
- Once a physical or stressful event has occurred and triggered
these responses, it becomes a sort of cyclic.. process. It feeds on
itself and that's why it seems to go away and then suddenly be triggered
back to a flare. That initial event sets up a foundation of hypersensitivity.
The muscles then become extremely vulnerable to stress, both physical
or emotional and that creates a long term cycle of muscle tension that
can last, for some, years. It becomes this chronic pain disorder.
Jill O. - What
happens when muscles become tight? How does that impact the rest of the
pelvis?? How does that impact the bladder??
- I think a good analogy is that if you clench your fist for a long
period of time, how does your hand feel after you stop? It hurts. There
are changes in blood flow. We believe that this is why some people get
congested veins in the pelvis with these problems. If you look at certain
types of CT scans you can seen a lot of big congested veins around the
prostate. There are some theories about IC that you get poor blood flow
into the bladder. They all fit together. We have to think about the
nerves, the muscles and the blood vessels and not just the organs. (Note:
One of the reasons why bladder removal doesn't remove the pain of IC
is that leaves behind a lot of the nerves and muscles that have been
part of the process and part of the problem.)
Jill O. - How can
a patient know if they have tight muscles in their pelvis??
- Well, it's tough. I think that's where a good physician or physiotherapist
needs to help. It's not only a matter of tight muscles but also of flexibility.
You have to have the ability to contract and relax the muscles voluntarily
so a lot of therapists will teach you how to do that. But, you usually
have to start by eliminating the trigger points that occur in the muscle.
That's where we have to break that cycle.. by stretching those muscles,
lengthening those muscles, and working out those trigger points... these
hyper-irritable fibers. But, you still need to work on the bladder with
IC. We still have to keep treating the surface inflammation in the bladder
but you need to combine it with good relaxation and treatment of the
muscles around the bladder that are contributing to this thing.
Jill O. - How big
is a trigger point?? Do you find them all over the pelvis? Can a patient
have a trigger point by their urethra??
- Usually, you can identify them about being about 1/2" in
diameter. You can stick a needle in those spots and get this very excitable
electrical signal. You can also stick a need into that same muscle outside
of the trigger point and it will be perfectly normal. So, a trigger
point is a small bundle of issue that is hyperexcited and causes referred
pain. You can view several videos of this testing at the website for
Headache in the Pelvis at: http://www.pelvicpainhelp.com.
Trigger points are
typically most common in the levator muscles up in the front of the
pelvis, but some patients also have trigger points down around the rectum
in the back part of the pelvis... and in and around the obturator muscle
and in and around the pudendal nerve. I don't see them that often by
the urethra. In IC, the urethra can be tender from the inner mucosa.
There can be trigger points around the bladder neck (on each side of
it) but we don't often see them around the urethral opening.
Jill O. - One other
key focus of your work is understanding, compassionately, the fear and
anxiety that pain can cause. When a patient experiences severe, constant
pain, they become scared. It's normal to be scared and anxious, right??
- Yes, it is. What Dr. Wise, as a psychologist promotes, is learning
to accept your pain, this fear, and to learn how to mentally relax through
it rather than allowing that fear to cause more muscle tension. This
is what he calls paradoxical relaxation. His method of learning how
to do this EVERY DAY almost on an automatic basis constitutes on of
the fundamental aspects of our treatment program. Patients have to learn
to recognize when their anxiety level is contributing or causing pelvic
tension, because so much of this is subconscious.
Jill O. - So, basically,
what you're saying is that pelvic pain patients can become stuck in a
cycle of elevated muscle tension. That they experience pain, it frightens
them and they have anxious thoughts (i.e. I'll be in pain for the rest
of my life). They then subconsciously tighten those muscles, which causes
even more pain?
- We actually teach this method by first treating the face, TMJ,
neck and shoulders. As a surgeon, I have a problem with neck muscle
tension. Once the patient learns how to do that there... it just translates
into the pelvis very logically and easily. And because you learn how
to relax your mind... and by doing this several times a day has been
one of the most helpful things for our patients.
Jill O. - Why are
the pelvic floor muscles so vulnerable??
- You know... we think of various areas of our body that are vulnerable
to stress and anxiety such as the brain with headaches, the stomach
with ulcers, the bowel with colitis. The sexual and excretion organs
are particularly vulnerable because we grew up focused on them. Usually
we're trying to protect those areas. So, Dr. Wise believes that it becomes
a subconscious pattern of protecting the bladder. Think about what a
man does when he is hit in the testicles. He bends over rapidly, the
muscles contract and pull up and he's in great pain. That is the bodies
protective response at work. So, in IC, it might not be that dramatic
but it appears that we may also have a similar protection mechanism
Jill O. - What's
the recommended sequence of events for therapy?
- Firstly, a good urologic and gynecologic exam to make sure that
nothing else is going on. #2. Identification of the trigger points,
#3 Treat the trigger points with myofascial release/soft tissue mobilization.
Simultaneously... we begin teaching paradoxical relaxation. This is
not a quick fix. This is a slow fix. We often tell patients that they
need to expect three months of time to make significant impact on their
symptoms especially when they've had this problem for years.
Audience Question & Answer Session Begins -------------------
- What should I do if I'm having a sharp, painful pelvic flare?
- If that person has been undergoing internal massage therapy then
they could have a revisit with their therapist. The relaxation exercises
that we teach are probably the most beneficial. Each individual has
to find whether cold therapy or heat therapy helps them through the
flares. Those kinds of physical modulations can be pretty good crutches.
You can also do a pushing exercise, like you are trying to have a bowel
movement. that also can help to relax them. (Rhonda Kotarinos, in
a past lecture, talked about just squatting down... and how that seems
to put the muscles into their proper positions.)
- My question is, my bladder has stopped functioning four times in the
last year, to where I have to be catheterized. Now I'm even able to do
it myself at home if need be. Why is this happening?
- The main reason that bladders become sluggish with IC is that
the pain fibers go into the spinal cord and inhibit the function. It's
the same reason that women sometimes can't void after childbirth, flaring
hemorrhoids, after herpes, after colitis. When that happens, usually
getting into a hot bath and letting the urine go is helpful. Working
VERY HARD on the relaxation and trying to eliminate the stimulus of
the pain. A lot of men have bladder elimination problems as well with
IC and prostatitis..
- I've got a few: in the mornings, I have problems urinating. I can't
get my flow started and it's extremely painful. Is that PFD?
- Same answer as above. The opening of the bladder neck is autonomic
in function. So.. it's overstimulated.. You have too much stimulation
of those muscles. Again.. it's about relaxation.
- How does the menstrual cycle impact the pelvic pain muscles and how
can we get relief?
- My own theory goes back to the fact that you have a lot more congestion
to the veins during the cycle plus some hormonal effects that we don't
understand. The relief has got to be a physical thing, unless they find
that any medications might be helpful.
- Jill, could you ask him if there are any new treatments on the horizon
- It's common knowledge that we're excited about RTX, BOTOX and the
BCG trials but that's all relative to the bladder wall and the bladder
surface. I think that there is more interest in neuromodulation and
that might be using electrical stimulation. These are the ideas that
are going to be developed with the NIH project coming soon! My approach
or belief is that if you are having success with bladder therapies...
it still is important to explore pelvic muscles issues as well. I feel
that they go hand in hand..
- I am 24 yrs old and have had IC for 3 yrs. I have done different treatments
that have helped, but none of them have helped with the sex. I know they
say that there are other ways to have sex besides penetration, but that
just doesn't do it. It has really hurt me emotionally. Luckily my boyfriend
has been understanding. Any ideas? Where are they in research on fixing
- This sounds like a lot of the nerve receptors of the vaginal area
are effected including the muscles of the pelvis and I would recommend
some biofeedback learning how to relax and contract those muscles because
Howard Glazer showed that that was very successful in women who had
Audience Question & Answer Session Ends -------------------
Dr. Andersons Contact
Headache in the Pelvis - http://ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&pid=HIP
Pelvic Pain Institute - http://www.pelvicpainhelp.com
Stanford University Urology Clinic - http://www.stanfordhospital.com/clinicsmedServices/clinics/urology/
Department of Urology, S-287
Stanford University Medical Center
300 Pasteur Drive
Stanford, CA 94305-5118
Phone: (650) 723-3391
Fax: (650) 498-6278
in Pelvis" is available for sale in the ICN
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Active and informed IC patients understand implicitly that no patient,
or website or presentation on a web site should be considered medical
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with a trusted medical care provider. Only your personal provider can
and should give you medical advice. The opinions expressed by our
speaker may not represent the opinions of the IC Network.
© 2003, The
IC Network, All Rights Reserved.
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