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
About Dr. Echenberg
Click here to read a more detailed account of chronic pelvic pain and the types of diagnoses and treatments that Dr. Echenberg provides medically for each of them.
Bio on Robert J. Echenberg, MD, FACOG
Dr. 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. His interests over the years have been varied. He has had experience in human sexuality education, medical ethics, end of life issues, established a perinatal ethics committee in the 1980s,and has always been interested in interdisciplinary care. Dr. Echenberg’s passion for integrative care in women’s health now continues with his creation of one of the first privately owned multi-disciplinary practices specializing in assessment, diagnosis and treatment of chronic pelvic pain (CPP) – “Women’s Health, Pelvic Pain & Sexual Wellness” – Bethlehem, Pennsylvania
I would like to share my background with you and how my own practice as a specialist in chronic pelvic pain (CPP) has evolved.
I completed my training in Obstetrics and Gynecology at the University of Michigan Medical Center in 1970, and soon became Board Certified and a Fellow of the American College of Ob/Gyn. Most of my years in practice have been here in Bethlehem, Pennsylvania (except for a few years in Bangkok, Thailand for the US Army, and 5 years – 1995-2000 – in Las Cruces, New Mexico, working for an indigent based clinic).
Upon returning to Bethlehem, PA in 2000, I was asked to establish a non-surgical program for women with chronic pelvic pain for a hospital in Bethlehem. I had no idea at the time how rewarding an experience this was destined to become. I had always thought that the excitement and gratification I received during the years I spent delivering several thousand babies, and doing my best to care for the gynecological needs of women through their life cycles could never be matched … until I ventured into this new professional endeavor.
We developed an approach and a “model” for assessing, educating and treating women with a wide variety of painful symptoms known, in total, as Chronic Pelvic Pain (CPP). Many of our patients (now over 1400 women and a growing number of men) have benefited immeasurably and can say that we helped to increase their quality of living and often that we have “given them their lives back”.
Guiding these patients, many of whom had suffered for years and even decades, back to improved health, made my newly created program an absolute pleasure to work in. It is my hope that I can continue to help CPP sufferers for the remainder of my professional years, as well as pass this model of care on into the future.
The current health care system in America, as many of you realize, is “broken” in many ways and in need of incredibly intense reform. The luxury of the old “family doc” spending time on the whole person is fading away. Breaking us up into numerous “body parts” is not the best answer to solving issues of complex chronic pain symptoms. Typically, many of the patients that we see in our program are at the “end of their rope” and have had numerous procedures, surgeries and tests, and have seen many different specialists who have not been able to “fix” their painful symptoms. In many cases, patients are at their lowest point when we begin to see them.
For many years as a gynecologist, my “blinders” were on (and my thinking) were just as I describe above. I believed that the cause of female pelvic pain was limited primarily to endometriosis, ovarian cysts, pelvic infections, and pelvic adhesions, as we had been trained in Gynecology. If those conditions were ruled out then the patient would be sent off to the urologist, GI doctor, low back specialist, family doctor, chiropractor, orthopedic doctor, and others, and finally even to the psychiatrist.
Through the program we developed, I learned that there were many other pathways to the pain. I became much more familiar with urinary bladder and lower bowel dysfunctions, because at least 80% of chronic pelvic pain is triggered by non-gynecologic functional disorders such as Irritable Bowel Syndrome (IBS) and Painful Bladder Syndrome/Interstitial Cystitis (PBS/IC) – as well as the innumerable nerves, muscles, and ligaments that combine to make up the rest of the supportive structures of the pelvis. Consequently, we developed very specific treatment regimens for these conditions including specialized medications, dietary changes, bladder and bowel therapies, as well as recognizing and treating many of the specific nerve pain issues such as pudendal and inguinal neuralgias.
I had to learn many new concepts particularly about chronic pain in general and how it differs so much from the “acute pain model” that most physicians are trained to follow. In the pelvis, there are multiple “triggers” for pain, and the nervous system and muscular system which is quite complex in that region of the body is usually (and unfortunately) entirely ignored by many of the pelvic “specialists.”
We also discovered a common thread among women who complained of pelvic pain, no matter what the cause — 85 – 90 % also experience sexual pain or discomfort as a significant contributor to their diminished quality of life. The impact of this sexual pain on their relationships and intimacy is therefore enormous. So we also deal with many of the conditions of the lower genital tract that diminish sexual pleasure and increase pain with sexual intimacy, such as vulvodynia, vulvar vestibulodynia, vaginismus, pelvic floor hypertonic dysfunction, and even clitoral pain and sensitivity. Now in our growing number of male patients, we hear more about erectile and ejaculatory pain as well.
As a member of the International Pelvic Pain Society, and previously a member of their Board, I have been privileged to participate in numerous national forums on chronic pain. Our model of care has been derived from a number of these sources. Therefore, in my practice, we believe strongly in integrative medicine. Along with the neurophysiology and myofascial pain issues, I needed to learn a great deal about other crucial modalities such as specialized pelvic floor physical therapy, yoga, acupuncture, therapeutic myofascial massage, diatetics, emotional counseling, trigger point therapies, peripheral nerve blocks, and other relaxation techniques, all of which are vital in dealing with chronic pain symptoms. Our program has become associated with a network of well-trained specialists in each of these fields. I am proud to say that our program has resulted in an increased quality of life for many hundreds of women/men and often have helped them restore intimacy in their relationships.