Interview with Dr. Echenberg by advocate Carin Willis
Interstitial Cystitis/Painful Bladder Syndrome advocate Carin Willis interviews Dr. E – transcript – January, 2012
Dr. Robert 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 done.
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 mind/body connection.
Dr. Echenberg: 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 pain.
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?
Dr. Echenberg: 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 the problem.
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.
Carin Willis: Oh my goodness – those are large numbers!
Dr. Echenberg: 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.
Carin Willis: 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 wards.
Carin Willis: 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.
Carin Willis: 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. Incredible!
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 issues.
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?
Dr. Echenberg: 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.
Dr. Echenberg: Thank you for having me.