Recent Interview with Dr. Echenberg
Carin Willis Interview with Dr. Echenberg - January, 2012
Echenberg did his undergraduate work at Brown University, medical training at
Jefferson Medical College, and his residency in Obstetrics and Gynecology at
the University of Michigan Medical Center. He is currently the founder
and director of The Institute for Women in Pain based in Bethlehem, PA and the
co-author of the book Secret
Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships, which features on his web site both an
endorsement from and an audio clip from Jill Osborne, founder and director of
the IC (Interstitial Cystitis) Network.
Carin Willis: Good afternoon and thanks again for
your time-I am excited to learn more about your background and your current
work helping women with chronic pain issues.
Dr. Echenberg: Thank you, Carin. I would like to begin by getting a little
background on your own personal story of pain and IC.
Carin Willis: In 2004, when my story with IC begins, I was pushing myself too
hard with full-time work and college schedule and I began to exhibit symptoms
of what I would later find out to be IC.
I also had IBS as a child and
some unresolved issues stemming from my childhood. I began to have severe chronic pain in my
bladder and vagina. When my IC was at
its worst I would rate my level of pain and its affect on my quality of life to
be at 7-9 on a scale of 1-10. In
addition to IC I had severe food and chemical sensitivities, migraines,
vulvodynia and dyspareunia.
Dr. Echenberg: I am so sorry to hear it,
Carin. Do you mind sharing with me how
you were treated by doctors and the medical community?
Carin Willis: I did have some compassionate doctors, the
most caring being my OB/GYN, but for the most part I was bounced around and
around and went through many of the typical tests to finally rule out all other
diagnoses. The second urologist I saw
wanted to give me the potassium sensitivity test to 'prove' that I had IC but I
had read and researched too much about this test, so I refused having it
Dr. Echenberg: Carin, unfortunately your story with IC is a
common one and one that I trust will be gradually changing. Did you find that any of the medications or
recommended treatments helped with your IC?
For instance, did anyone suggest pelvic floor retraining exercises?
Carin Willis: I was initially given medication
for overactive bladder and medication for depression, because in 2005, I was
lead to believe that those were the two main pill-form treatments for IC. I did decline any bladder instillations
recommended by the urologist-again out of reading too much about the
ineffectiveness of those types of therapy at the time. I felt left alone by the medical community
after refusing their drug treatments and bladder instillations and no one even
mentioned trying pelvic floor retraining exercises. The question I often asked the doctors and
myself was how I could have developed a disease as painful and devastating as
IC- knowing that I was not born with it!
I felt as if I did not go along with the doctors’ treatments that I was
alone to figure out my own path to well-being.
Dr. Echenberg: Again, I am so sorry to hear that most of
the doctors you came into contact with left you feeling alone and that your
pain was invalidated. I am not sure how
much you have read about my clinic-but every day I work with women in severe
chronic pain who share similar stories with us.
Often they have travelled far and wide to find help and have spent great
sums of money to do so – and still have not been helped. Nonetheless through your research and your
own journey back to health you have realized that there are doctors and health
care practitioners who have a commitment to help women with chronic pain. You also touch on an interesting key point
that I commonly point out to my own patients-that often the chronic pain that
develops in women - develops gradually over a period of time and is not
something that they are born with. Can
you share with me some of the treatments that you utilized to get to the place
that you are at today? How would you
rate your pain level now?
Carin Willis: I feel that the best approach to treating
IC or any chronic pain disease is through a combination of both Eastern
(holistic) and Western medicine. I used
the IC elimination diet, two TCM (Traditional Chinese Medicine) doctors,
acupuncture, natural anti-fungals with high doses of acidophilus, as well as
Reiki, meditation and yoga to improve and eventually remove most of my IC and
related conditions. I also finally
sought out some much needed emotional counseling as I also believe in the
In general I would agree with you, Carin, and many of the women who come
to my clinic tell me they want to be treated 100% “naturally” but usually the
pain levels are so severe that I initially recommend more aggressive techniques
for pain management in order to begin turning down the dial on their pain.
We have also found at our “Institute for Women in Pain”
that the best approach to chronic pain is taking an integrative path to healing
so we have connected with doctors and a variety of other health care professionals
in order to begin to effectively manage the pain associated with their
diagnosis of IC.
Now I would like to give you more of an overview about
pelvic pain and a little bit more about my background, and how I have changed
my focus to helping women with chronic pain issues. A recent article by Dr. Fred Howard, Chairman
of the International Pelvic Pain Society, points out that at least 85% of all
women with otherwise unexplained chronic pain in the pelvic region have the
urinary bladder as at least one of the most significant “triggers” of their
The definition of chronic pelvic pain (CPP) is any type
of persistent pain or discomfort between the “belly button” and mid-thigh that
lasts for at least beyond 3-6 months. In
the medical community we should be separating “acute” pain from “chronic” pain
because “acute” pain is actually necessary for our survival. If we did not feel ourselves stepping on a
nail, breaking our leg, or having a heart attack, we would be in great
danger. However, once all of those
“injuries” are long since healed, “chronic” pain sometimes takes over and our
nervous system and muscular systems “remember” all of the previous traumas we
have experienced (physical, emotional and otherwise). All of this information is now exploding out
of the pain research world over the last 10-15 years. Over the course of my 30+ years as an Ob/Gyn
physician, I now realize that I knew none of this type of information which is
now linking previous traumas to common ongoing functional disorders such as IC,
IBS, endometriosis, vulvodynia, vulvar vestibulitis, pudendal neuralgia, etc.
and that they are all common components of CPP.
I joke with patients that I actually won the anatomy
prize in medical school but then never needed to remember that there were
muscles, nerves and ligaments in the pelvis, and that these structures are
commonly the cause of the immediate pain the individual is experiencing. So in our program now, I introduce these
important relationships to each new patient.
I admit, that over the course of
those 30 years, I often was not asking the right questions and did not have the
appropriate knowledge base and “model” in my medical thinking to best take care
of their CPP.
Carin Willis: Is it an issue of medical schools and
residency programs not teaching about these chronic pain issues?
Absolutely, that is a significant problem lacking in most programs. I recently spoke to a class of medical
students about CPP and it was quite clear that these concepts were new to
them. The basic science in pain research
and certainly in pelvic pain research usually does take a great deal of time
filtering down to the day to day care of patients. I am afraid that it will still be a number of
years until more physicians will have the overall knowledge base to care for
these common pain disorders in women.
One of my biggest goals is to help speed up that process and also to
alert younger women and girls about the combination of symptoms that could more
easily be diagnosed and treated if they were aware of “connecting the dots”
earlier – often even in their teenage years.
Back in 2001, I was asked to start a program for the
treatment of CPP that would primarily be non-surgical. Many young women were receiving multiple
invasive diagnostic procedures and surgeries for pain and either “nothing” was
being found to explain their pain or often the wrong things were seen that were
not necessarily the reasons for the pain.
You commonly cannot view IC or other dysfunctional pelvic pain issues
using CAT scans, Ultrasounds, MRIs, and various surgeries and scopes. Consequently, many patients suffering with
sometimes extreme losses in the quality of their lives are accused of being
“drug seekers” or that the pain must “be in their heads” because none of the
tests adequately “explain the pain”.
Doctors generally need a test to be positive before diagnosing most
diseases. There is a great need for a
simple urine test to diagnose IC so that more docs would believe that the
illness even exists. Fortunately there
are many researchers out there who are in the process of developing such a
test, but it may still take some time to be on the market.
Dr. Lowell Parsons is a prominent Urologist in
California who has been researching IC for over 20 years. When I first heard Dr. Parsons talk about IC
back in the 1990s, I didn’t pay much attention, especially when he said at a
large Ob/Gyn symposium that even the secretaries at his front desk could
diagnose IC over the phone. I now know
that that is not only possible but my own office staff often is able to do
so. What he said then and what I believe
now is that the combination of urinary frequency, urgency and any type of
persistent pelvic pain that results in a patient seeking one or more
specialists and not getting a diagnosis, had
to be IC until proven otherwise. When
those sets of symptoms hamper a person’s life, and their urine cultures are
negative and the drugs for “overactive bladder” don’t work, I would challenge
any physician to explain that set of facts as anything other than IC. Unfortunately, people are still being told
they have a “small bladder”, that they simply are drinking too much, and that they just need to learn to live with
Tragically, what once was felt to be a rare condition,
IC is now felt to affect about 16-18% of all reproductive age women in America
and a growing number of men as well.
That means that about 1 out of every 6 women between ages 14 and 50 have
some degree of IC or “painful bladder syndrome”. That adds up to tens of millions of young
women in this country who continue to suffer more and more with CPP in general.
It is also estimated that 90% of all women with CPP have some degree of sexual
pain (dyspareunia) as well. My own
experience over the past decade confirms these unfortunate stats.
Oh my goodness – those are large numbers!
Yes, Carin. I have
just given you some very hard statistics about the numbers of women with
chronic pelvic and sexual pain issues. Remember that the studies and my own
experience shows also that IC is a major culprit from early on in many of these
women who end up with significant pain later.
Their IC symptoms may stay largely “under the radar” for quite some time
when they are younger and not really become consciously upsetting until some
event such as a childbirth, surgery, accident, emotional or physical trauma, etc.
“throws them over the edge”.
Another interesting thing to note is that there seems to
be a link to girls who participate in various sports throughout their younger
years who commonly sustain multiple minor injuries (sometimes more major) and
those injuries may also contribute to later nerve and muscle “pain memory”. Many
coaches and trainers urge their better athletes to “stretch it out and get back
in the game”, and these young women
learn to “play through the pain” and later go on to learn how to live their
lives through the pain including “having sex through the pain”. Recent
research shows that even ankle or ACL injuries can lead to structural strains
and/or injury to the pelvis later in life.
Slowly over time, these collections of “good pains” (injuries sustained
while having fun and doing something with ongoing passion), and “bad pains” (which
can include physical, sexual and/or emotional abuse) all can contribute further
to the muscle and nerve “memories” that I mentioned earlier.
These prototypes of young women who later develop
chronic pelvic and sexual pain disorders include many who have developed a high
pain tolerance. Often they are very
strong people who after enough of these “traumas” begin to feel that their
bodies are failing them and that they now have developed chronic pain issues
that can become debilitating. So you
were on the right track, Carin, when you realized that your chronic pelvic pain
symptoms were not something you were born with, but happened after a series of
traumas throughout your life, along with developing IC along the way.
Wow. That is exactly the
personality that most people would describe me as having and that also sounds
like me with the 'high tolerance to pain' scenario. That is very interesting that a lot of us
with chronic pain fit into a prototype.
Dr. Echenberg: The hope is that we can use both the
statistics and the information about the prototypes in the future to provide
preventative measures with girls exhibiting similar personalities with a strong
drive and high pain tolerance. Of course, young people, their parents,
teachers, coaches, trainers, and certainly their school nurses and private
doctors need to be able to understand and diagnose illnesses like IC and IBS
much earlier as well.
Carin, I wanted to ask if you had a chance to read the
book that I co-authored with Susan Bilheimer called “Secret Suffering: How
Women’s Sexual and Pelvic Pain Affects their Relationships”?
Carin Willis: I have read some of the reviews and
it is definitely on my 'read soon' list for IC resources!
Dr. Echenberg: I cannot go into detail about the
book now but I would highly recommend it to you and anyone reaching out to you
via your website. You may find it
helpful and even therapeutic to realize
that the women featured in my book are very similar to yourself.
Carin Willis: I am looking forward to reading it,
Dr. Echenberg and I noticed that it recently came out in paperback form-do I
order it through Amazon?
Dr. Echenberg: Yes, it is available through Amazon.com
or you can also order it through the IC Networks website. [http://www.icnsales.com/pain-care-overcoming_pain/]
Well let's get back to our discussion about the current
costs associated with women suffering from chronic pelvic pain issues. These overall costs are very high and can
include multiple trips to the ER, countless trips to the doctor, not to mention
the time missed from work for all of these visits. All of this, of course, comes at a
significant cost to our economy, health care system and to the patients
themselves. More importantly, this
entire process can be extremely devastating to the women dealing with these
issues in yet another way. As I said
earlier, so many of our patients relate to us that they have been told, and now
actually believe, that their symptoms are “all in their heads”. Many of these women are clinically depressed
and anxious and even thoughts of ending their lives begin to develop. We take some pride in our program by telling
our patients that at the very least we will have succeeded if we are able to
keep them out of the ER, out of the Operating Room, and out of the psyche
Dr. Echenberg, the prevalence and severity of these health issues for
women here in the US is so much larger
than I even suspected. That really makes
me sad for my sisters here in America, but I noticed that you served on the
board of the International Pelvic Pain Society and much of my reader base
includes a significant percentage of women with chronic pelvic pain issues who
live in other countries. Can you please
touch on what is happening as far as research and treatments for pelvic pain
sufferers on an international level?
Dr. Echenberg: Over the past 10-15 years, the US
has been at the forefront of research on pelvic pain issues. IC is also quite common in Japan so there has
been a good deal of Japanese research on IC for some years. There is also a great deal of work going on
in Europe which is reported continually through the website of the European
Urological Association. As I said
earlier, there currently is no simple cost effective non-invasive chemical or
urine test to diagnose IC. Doctors need
a test to diagnose IC more convincingly.
The potassium sensitivity test and hydro distention of the bladder under
anesthesia have long been used to diagnose IC but they are invasive, more
expensive and can be painful to the patient.
Carin Willis: The potassium sensitivity test has
always seemed a barbaric way to diagnose someone with IC or bladder issues. I
think most patients and doctors would agree that there has to be a better way
for reaching a diagnosis.
Dr. Echenberg: Yes, I agree, but “barbaric” may a
bit of a harsh term to use for those docs who at least are trying to make a valid
diagnosis, especially if otherwise they would make no diagnosis at all. I believe that the potassium sensitivity test
is almost never needed since the diagnosis usually is easy enough with just
getting a good history and ruling out a few things. I mentioned Dr. Parsons earlier so I would
like to know if you ever heard of the PUF scale for easier diagnosis of IC
which he developed over a decade ago.
No I am not familiar with the term.
Dr. Echenberg: The PUF score stands for
Pain/Urgency/Frequency scale, and it measures these areas by the use of a quick
easy set of about 8 or 9 questions that most people can answer in just a few
moments. It can be used to screen
patients in any doctor’s office that sees young women on a regular basis. The PUF score was later adopted for use by
the International Pelvic Pain Society and is used as part of the questionnaire
that I use for every new CPP patient.
Dr. Parsons initially conducted thousands of potassium sensitivity tests
and his research group developed the questions on the PUF scale and a scoring
system that would simply give the doctor a statistically accurate comparison of
how likely the answers to those few questions would compare to the results of
the potassium test. So the score on the
PUF was able to positively diagnose IC and chronic pelvic pain patients without
causing the patient any pain.
Carin Willis: That was an incredible connection to be able
to ask some simple questions of the IC patient without inflicting any further
pain on them to come to the same diagnosis.
Dr. Echenberg: Yes it was! We are now finding that IC is the cause of some
of the “old wives tales” of 'honeymoon cystitis', repetitive bladder infections
(UTIs) in young women, or doctors telling patients that they were simply born
with a 'small bladder.' I am sure that
you noticed the lines for women's restrooms are always longer and if women
actually talked with one another about some of their pelvic and bladder issues
they would discover that they are not so alone with pain, frequency and urgency
Another area of confusion for years has been that of the
diagnoses of endometriosis and IC. In
the world of CPP research, these 2 conditions are aptly called the “Evil Twins”
of pelvic pain. So many young women are
diagnosed early with endometriosis and are labeled with that disorder forever
more. Every pelvic pain they have is
blamed on the endometriosis and many of these women undergo many surgical
procedures to help their pain. The
problem is that IC is also so common and so often, these surgeries don’t
alleviate the pain successfully and in retrospect, these women have had bladder
symptoms all along. We commonly and
unfortunately see this in many of our CPP patients. We sometimes see as many as 6-8 laparoscopies
having been performed on women before the age of 30 and even some
hysterectomies – and these women are now sitting with us and telling us that
they are in the worst pain ever. Both conditions are common so it is really
important for your readers to try to find practitioners who understand how to
determine the differences between them.
Carin, ultimately we are a pain management center for
the pelvic region and it is important to know that all the research in “chronic
pain” is now showing that the “pain
itself is the diagnosis”. When I
treat IC, vulvodynia, sexual pain, etc. I am treating all of those as
“triggers” of the pain itself.
Carin Willis: That
is a very powerful statement. I hadn't
thought of it quite like that before.
Dr. Echenberg: Yes, it is an important thing to note that
chronic pain by itself can be its own diagnosis. When the body is subjected to chronic pain or
danger signals the nervous system is in a state of hyper activity all
the time. I explain this to all our patients and ask them to visualize the volume
dial on a radio cranked up to 'high' and that it keeps on 'high' even after
injuries are healed. They can then
understand why even a small bladder cramp after drinking an acidy glass of
juice, or a small bowel or uterine cramp can shoot their pain level to the
ceiling. It also explains why added
stress compounds the pain/danger signals and why it is so important to “turn that dial down”. We
have been successful in treating patients with chronic pelvic pain by working
through the central nervous system to turn down the “volume” - while also
treating their “triggers” and referring almost all of them to specialized
pelvic floor physical therapy. When the
dial does not budge, the entire body stays in a “fight or flight” mode and
makes it much harder for the spasming of the muscles and ligaments around the
entire pelvis to relax. The nervous
system is doing this to “protect” the individual but is really out of control
in a very dysfunctional way. It is
really helpful for our patients to understand these concepts in order to gain
some control over their pain issues. It
makes it so much easier for us to adequately treat the overall pain issue
connected to their IC, IBS, endometriosis, etc.
This analogy of the “dial being turned up” is beginning to explain how
so many medications and other modalities such as meditation, yoga, acupuncture
and even prayer actually work. It is
also why the approach of integrative medicine is where we should be heading
when it comes to chronic illness.
Carin Willis: So
in essence the medical community has come full circle to embrace healing
modalities that have been around for a long time?
Yes, that is a great
way of seeing it. Clinical medicine is a bit behind, but at least the newest
scientific studies are beginning to show us the way. I believe that in the future, chronic pain
will be treated much differently by utilizing techniques to change the
chemistry of the brain as well as how pain signals are processed. There is a great deal of research happening
in the world of neuroscience related to chronic pain. This field of study is less than a decade old
but they are making breakthroughs at a significant pace. For instance, there is a great team of
doctors and scientists in Australia (www.noigroup.org)
who have been conducting research educating individuals with chronic pain to
retrain their brain.
Carin Willis: Are
you referring to brain neuroplasticity?
Dr. Echenberg: Yes that is exactly the science behind it -
that our brains are not the immovable structures that we once thought… that we
can, in essence, retrain our brains to understand the difference between danger
signals and pain signals and to not have the pain switched on all the
time. It is important that when we come
close to touching a hot stove that we back away – we learn by experience that that
is a danger signal. The so-called “neuromatrix”
within the brain's cortex is where this pain memory is stored. I am very encouraged by this research and
will continue to utilize as many “tools” at my disposal to help these patients
with CPP “turn down their dials”.
Carin Willis: Thank you Dr. Echenberg for your
time today, and for the work you do to help women who suffer from IC, and other
chronic pelvic and sexual pain disorders.
Thank you for having me.
Information/Resources referred to throughout this
(Dr. Echenberg's institute)
http://drparsons.ucsd.edu/default.aspx (Dr. Lowell Parsons)
http://www.noigroup.com/ (Australia researchers and their chronic
http://www.ic-network.com/ (References and to order “Secret Suffering”)