I became hysterical and when my husband got home I fell down on the floor and just begged him to kill me because I couldn’t do my job, I couldn’t be a wife, I couldn’t take care of my child, and there was no reason for me to go on. – Jane (interviewee)
The doctors told me it was all in my head, that I really couldn't be having any pain because I was no longer testing positive for a urinary tract infection. I would pray before going to see each new doctor. I'd walk in the office thinking, "Please. I don't care if I have cancer at this point. Just tell me it's something so I can learn to deal with it or take steps to make it better." – Kat (interviewee)
I was diagnosed with vulvodynia when I was 20, but I know I had it much longer than that. My family physician had no idea that vulvodynia was a condition and even went so far as to tell me that the pain was all in my head. – A patient of Dr. Echenberg
When the pain first started, I silently continued intercourse. When the pain was severe, I just had to stop. We would try at times, but I couldn't stand the pain. Eventually, my husband quit going to bed with me. He would stay up at night watching porn and satisfying his needs. We were married only two years when the pain started. – Survey Respondent
Managing a Pelvic Pain Treatment Center
Running a Pelvic Pain Management Program
What is so surprising to me is how much I love this program and how it is so different from what I always thought I enjoyed most about being an Obstetrician/Gynecologist. Many young doctors, including myself have chosen Ob/Gyn because in general you are not taking care of long term chronic medical issues. Most everything about the specialty is attractive to young physicians because of the joy of sharing the birthing experience with countless families, the excitement of acute emergent problems that can be resolved relatively quickly, and dealing primarily with otherwise healthy younger patients. Even most gynecologic (non-pregnancy related) problems are solvable either medically or surgically and don’t linger for years.
So I was nervous at the start that I would not particularly enjoy the care of patients who had these long term difficult pain issues. However, over the course of the last several years, I have found that the satisfaction for me and the gratitude expressed by most of our patients has made a profound difference for me.
I started out seeing just a few chronic pelvic pain patients in the general pain management center at our hospital. I wanted to be around a specialist in pain to learn as much as I could about dealing with these types of patients. After all, for over 30 years, I had taken care of gynecologic pain virtually entirely from the “acute pain” model. Those women who continued to have pain following all of my medical expertise were either referred to other specialists or disappeared from our radar.
The pain management specialist that I worked with over those first months was very pleased that someone was actually interested in pelvic regional pain because, as he told me, he was not. He was an anesthesiologist who had taken a fellowship in pain management, as most of these specialists are. He explained that they were not really trained in dealing with the chronic pain issues of the pelvic region. They generally avoid urinary bladder, reproductive organ, sexual, and lower intestinal triggers of chronic pain.
So he was happy to be able to refer to my program. I continue to get referrals from pain management as well as see numbers of individuals who (have already “gone the route” of many specialists including various pain clinics.
In essence, what I eventually realized was that our program really was a “pain management program” for the pelvic region. Although most of the conferences and texts and professional publications exhort physicians and other health care professionals to work together in a multi-disciplinary and multi-modality fashion, it is quite rare to actually have such a center for chronic pelvic pain.
I wrote a small description of our program for management of chronic pelvic pain which appeared in the professional journal “Contemporary Ob/Gyn” in November, 2004. I stated in that article that “we’ve found that this cost-effective, multi-disciplinary program can be effective for many painful conditions that traditionally are very difficult to treat. It is based on a neurophysiologic approach supported by much of the recent literature on management of chronic pain, which categorizes CPP as a “Complex Regional Pain Syndrome” (reference here). Management is not only based on the traditional anatomy, physiology, and acute pathology of the pelvic organs, but on the abnormal neural (nerve) pathways accompanying chronic pain. Conditions characterized by such neuropathic type pain include interstitial cystitis, irritable bowel syndrome, vulvar vestibular syndrome, endometriosis, and pelvic floor dysfunction.” (reference here).
Our program, which is described elsewhere in this book, ultimately took on the form of a typical pain management center. The earlier we pick up on, or the earlier patients are referred in the course of their chronic illness, the quicker they respond and stay improved and can actually be discharged from the program. However, what I did not realize before starting this venture, was that we would continue to care for a portion of our patients for quite a prolonged period of time.
Because we spend so much initial time with each patient and because we see some of them very regularly for considerable periods of time, we get to know them extremely well. Not ever having been trained in caring for chronic long term pain issues, I had no idea that these long term patients would continue to return on such a regular basis in order to simply maintain their improved physical symptoms while frequently reminding us that we have been allowing them to “get their lives back.”
Quality of life issues for these women is paramount and when we can improve their ability to lead more normal lives and deal with all of their relationships both at home, work, school, etc. in a more “normal” fashion, they are among the most grateful patients I have ever treated. I always had thought that the several thousand births that I had attended over 25 years would have remained the highlight of my professional career, but helping women in pain seems to have exceeded even those “highs” from my past work.
Managing a chronic pain center brings with it not only the great satisfaction of helping patients get back to a semblance of normalcy in their lives, but it also has a large component of witnessing and hearing, and often being confided in, concerning some of the most tragic emotions and stories that you can imagine. For instance, I wasn’t prepared for was the woman who told me that her pain had peaked so badly on a particular day, that as she watched that famous clip on TV of Sadaam Hussein about to be executed, she actually told me that she “envied” him at that moment “because he was about to die”.
Not uncommonly, we are told during the course of our interview, or subsequent therapies, things about our patients’ past histories that are shocking, sad, tragic, utterly sorrowful, and even criminal about what they have experienced as children and even later as young and older adults. Occasionally we are told that we are the very first to hear of some of these events and feelings – ever! Physical, emotional, and sexual abuses towards women are so common in world wide cultures, including our own, but it is very striking to tap into these emotional pains that so obviously have contributed to the “imprinting” of the central nervous system in our patients with CPP.
We also hear story after
story about how so many of our patients say they literally have never been
listened to or believed regarding their pain – spouses, partners, families,
co-workers, bosses, school mates and teachers, and especially the many doctors
who have told them that there is nothing that they can find that adequately
explains their pain. No diagnosis that
makes sense to them is ever found, and treatments they have received have never
adequately worked. Many of them either have
been told explicitly or implicitly, or they have come to their own conclusion
that it has all been “in their heads!!”
Some of the diagnoses like interstitial cystitis (IC) that we commonly encounter, are actually rejected and disbelieved by so many physicians, that the patient has become exhausted, depressed, and anguished when she begins to realize that none of her “specialists” can make the correct diagnosis and relieve her symptoms.
Dr. Daniel Brookhoff often repeats the story of when he was primarily involved in treating pain associated with advanced cancer, a woman came up to him after his talk and asked if he could take care of the severe pain she was experiencing with her diagnosis of interstitial cystitis. He told her that he was not a urologist and so could not take over her care. (He also reveals when he tells this story, that he remembered back in medical school one particular mention of Interstitial Cystitis by a professor who warned the students to stay well away from these patients because they were so difficult to deal with.) She persisted and when he told her finally that he really could not care for her, she turned away from him while saying that she “wished she had cancer – so that he could take care of her pain”. This incident affected Dr. Brookhoff so much that he investigated further into bladder associated pain issues and is now one of the country’s leading experts on the pain associated with IC.
I, too, have been told by some of our patients that they wished that they would at least get a specific diagnose “explaining” their pain, even if that would be a life-threatening illness.
Another aspect of managing a pain center that I could not have anticipated was the potential for suicidal thoughts and actions among our patients. My first experience with this was a woman who did have a long history of depression, and subsequently developed true physical pelvic pain problems. We have found that these types of patients who have real reasons for pain, but also happen to have clinical depression or other more serious emotional or psychiatric diagnoses, have very little chance in our current health care system to get appropriate care for either. No one wants to care for them.
Our patient slipped deeper into her depression in spite of what we were physically treating. She did have a psychiatrist at the time, but was not receiving regular or adequate care for those issues. I was called one day by her husband that she had been admitted to the psych unit at our hospital because of an attempted overdose of a sleeping pill that she had previously been prescribed. I went to the unit that evening to see her and talk to her husband and daughter. When I looked through her chart at the nursing station, several of the nurses knew that I was a gynecologist and wondered why I was visiting someone on that unit. I explained that the woman was a patient in our pelvic pain program and that I was simply following her case, What struck me most was the following information that they shared with me that evening.
They first told me that they had no idea that there was anyone actually specializing in treating women’s pelvic pain. After I told them more about our program, they confided in me that not only was there usually a predominance of female patients on the psychiatric floor, but that it seemed to them that a significantly high percentage of these in-patients had chronic pain issues as well. They apparently had been told by many of these patients over the years that their chronic physical (and often pelvic and sexual) pain issues had usually not been adequately addressed. We agreed that these patients often are misunderstood and even neglected in the care of pain.
In this regard, I recently spoke to a group of physicians, and before beginning my talk, I was asked how I could tolerate caring for so many women who must be “hysterical drug seekers”. Obviously, in their particular gynecologic practice, that was the consensus of how they perceived women with chronic pelvic pain.
Following my patient’s suicide attempt, I called the pain management doc that I originally worked with and asked his advice because I was considerably disturbed by what had happened. Our conversation was fairly brief. He told me bluntly that if I was going to be caring for chronic pain patients on a regular basis, that I should be prepared for these unfortunate events. He confided that in his own practice there were about 3 or 4 suicides per year. He was not sure about how many were attempted.
This past year, we did lose a patient. I received a call one afternoon from the county coroner’s office. I was informed that a middle aged patient of ours had taken her own life. I was being called because I had been the last doctor to see her only 2 days earlier. Our entire staff and I were shocked because she had seemed so very much her own self when we had seen her that week. We knew that she had had a large set back in her health over the previous 6 months. We had controlled her pelvic pain for quite some time before then, but she had developed a very significant cancer unrelated to her pelvic region, and had undergone surgery which triggered much of her pain to return with a vengeance. Even though her cancer had adequately been treated and possibly cured, her pain took her over the edge.
These cases were obviously the most tragic in our experience but the truth is that we commonly have at least a few patients at any one time who we worry about because of depression associated with long term pain - commonly even very young women. This aspect of running a pain program is one of the things that I never had anticipated. However, in spite of the nature of these difficult issues, on balance, we feel that the help that we provide actually prevents the vast majority of our patients from these types of emotional deteriorations. Actually, many of our most challenging cases at some point tell us how we have “given them their life back”, possibly sometimes even literally!
Another surprise that I found working with chronic pelvic pain management was how young so many of these women have been. Of course we are most pleased when we encounter patients earlier in the course of their pain issues, but too frequently they already are quite severe in their symptomatology even in their teens or early 20s. We have had numbers of high school and college aged young women come through our program and I have learned a great deal from them.
A good example of such a young woman has been Amanda, a senior at a local college, who was also preparing for her run for Miss Pennsylvania over this past year. Her interest in her diagnoses relating to her chronic pelvic pain problems became so high that she ultimately created a woman’s health newsletter on her campus and over the course of the year, wrote excellent articles on pelvic pain in general, as well as on interstitial cystitis, pelvic floor myofascial dysfunction, and vulovodynia. Because of her efforts, so many young women on her campus became familiarized with these otherwise “unknown disorders”.
Amanda also used “Chronic Pelvic Pain” as her platform in the pageant itself. She previously also had invited me along with another young patient of ours to give a combined talk to a group of college students about these subjects. Because of giving that talk I had the chance to hear from them about some surprising things that normally I would not have understood or ever have heard as an older male doctor. They told me that because of their youth and attractiveness and the fact that their pelvic pain symptoms were “invisible”, they were very accustomed to not being taken seriously by doctors, families, boyfriends, and others.
What they said was that on many occasions, they wanted to come into doctor’s offices looking their worst, with no makeup, unkempt, and basically “looking like they felt”. Since then I have heard quite a few women say the very same thing. It is striking because almost all women want to look their best when they see the doctor, especially the gynecologist. Freshly shaved legs, clean, nicely dressed, and smelling good are all in the minds of most women coming in for their appointments. However, these young women in pain really wanted to look sick so they would more likely be believed. It is only a guess as to how many other women of all ages have had these thoughts.
Another thing I learned from these young women that I had not heard before was the term “manning up”. They, like many of the younger pelvic pain patients, had had years of sporting injuries. To “man up” meant to play through the pain – be like the men – don’t show your pain – grin and bear it. Don’t be a baby! Don’t be a “girl”. I have since heard this term in quite a few contexts including from a very successful professional woman who told me that to “man up” in the business world was to be tough like the men – if they wanted to make it in their professional lives. Again, as an older man, I had not heard this term, but it explained a great deal to me, looking back on so many of the women I have cared for over the years.
Running a pain management center for the female pelvis requires a multi-disciplinary, multi-modality, and a multi-organ system approach. We work with specializied pelvic floor physical therapists, a nutritional counselor, psychological counselors, acupuncturist, massage therapists, and encourage our patients to utilize any relaxation or mind-body techniques that will tend to help their pain and tension (such as Yoga and meditation).
As for other physician specialists, there are unfortunately only a few in our locale that have any interest in dealing with chronic pelvic pain. My experience in going to various parts of the country and talking to many health care providers is that there are too few gynecologists, urologists, gastro-enterologists, colorectal surgeons, and even family physicians and other pain specialists who have any significant training, interest, or experience with chronic pain.
Since pain is the issue and pelvic pain has an association with a number of other systemic disorders such as fibromyalgia, TMJ, myofascial trigger points and pain, and various auto-immune disorders such as Sjogrens disease and lichen sclerosis, other specialists such as rheumatology, dermatology, and neurology could sometimes be helpful as well.
The muli-modality part of the equation of treatment involves the physical therapy, pharmaceutical drugs for chronic pain such as anti-seizure meds and some tri-cyclic anti-depressants for the control of chronic neuropathic (nerve generated) pain, as well as the shorter term use of acute pain meds including opioids as needed. anti-histamine meds because of the inflammatory response to chronic pain. Also treating the “triggers” of pain in the pelvis requires the multi-organ system approach including the urinary bladder, lower bowel, and reproductive organs, along with the knowledge and skills to assess and treat the musculo-skeletal and peripheral nerve issues that almost always accompany these chronic pain issues.
Because of the complexities of tying many different approaches together into a coordinated program for CPP, there are very few centers throughout the United States that actually pull all of this together. There are even fewer privately run centers of this type outside of the larger academic institutions. Even these larger settings are few and far between because it is just too difficult to accomplish this in the corporate type setting. From my own personal experience and that of many others I have met along the way, the politics and funding of these types of centers are just not yet a priority - too many departments, too many budgets and cost centers to coordinate when there is a perception that it is not profitable to do so.
Unfortunately, the incentives in our current system are for all clinicians to perform as many surgical and diagnostic interventions as possible.
Most of the pelvic pain patients we see in our program have seen many different specialists, have undergone many expensive scans and have had multiple surgeries for either diagnostic or therapeutic purposes. We commonly tell them that the “system” would not flinch if we were to order yet more CT scans or ultrasounds or laparoscopies. Yet their insurances balk at paying for extra time spent in the office and the use of various modalities such as Yoga and other relaxation and hands on techniques which are far less expensive and would often prevent the further utilization of far more costly technologies.
I do believe that it is only a matter of time before third party payers realize that chronic pain is costing our system far more than it should and that patients would benefit even more with the use of less expensive modalities and more quality time spent. The model of a chronic pelvic pain management center that we are currently operating is showing to be not only highly effective for these difficult patients, but it can be satisfactorily profitable for the clinician as well. What we are showing now is that a combination of non-surgical approaches including good medical management, patient doctor shared responsibility, multi-disciplinary referrals, and the judicious use of office procedures such as bladder instillations for painful bladder syndrome, peripheral nerve blocks for pudendal and ilio-inguinal neuralgias, and trigger point therapies all can be very effective, cost saving, and profitable.
I am frequently asked if we are studying and researching any of our findings. My answer to that is that in order to do proper studies in today’s medical environment involves setting up treatment protocols that generally study the effectiveness of one variable out of many. In fact, when patients do go to the larger and more prestigious academic institutions for their pelvic pain, many of them are placed on one protocol or another. This usually involves eliminating numbers of other variables for treatment and concentrating on only those under study. Also comparison groups are usually needed for controls, so the patient often doesn’t know if they are on the “real thing” or not (“blinded studies”).
In our case, the one big variable is the entire model of the pelvic pain management center itself. The comparison population then becomes the patient’s whole previous history which often has been that many other treatments and approaches have not been adequate, and in some cases have made the pelvic pain even worse. Interestingly, some of the best data about the effectiveness of these types of pain centers have come from Great Britain. It appears to be simpler to study a multi-variable program in that country, perhaps because of the easier ability to have such clinics when there is less competitiveness between departments, specialties, and budgets in a government paid health care system.
Not to be entirely cynical, but I believe it is also understandable that in our market driven and highly technology centered system here in our country, that support will often go to the more costly, more highly paid, and more high tech approaches first. More holistic, lower tech, and less costly approaches to most medical problems are not only obviously more desirable, but if they can be shown to be even more effective as well, should soon be the standard of care, especially since our soaring costs of health care should be one of our nation’s largest priorities.
In summary, our chronic pelvic pain management center has been and remains a work in progress. There have been very few models like it, and we have attempted to take the best parts of all of those of which we were aware. Our patients may well be the best judge of how well our program has been succeeding. Very few women, and the few men we have cared for, stop coming to our program until they have felt they are ready to be “graduated”. They consistently share with us that our office is the first that has really “listened” to them, that our combination of treatment modality really works, and they have a continued feeling of “safety” when coming in to see us. Indeed, some say they are sad when they no longer have to see us on a regular basis.
Our statistics coming from intake and follow-up surveys reveals that we have very significantly impacted their pain and their quality of life. On average, even though we see a very difficult population of referred and otherwise “failed” pelvic pain patients, their average intake pain starts at 8 out of 10 and falls later to an average of 3.out of 10. Their quality of life, on average, correspondingly rises from 3 out of 10 to 8 out of 10. So it is no wonder that I have fallen in love with my work all over again. We all know that it works, and we all love what we do.