Chronic Sexual and Pelvic Pain Disorders – How So Many Women Suffer in Silence
by Robert J. Echenberg, MD, FACOG
My name is Dr. Robert Echenberg and I am one of only a small number of physicians in the United States, solely specializing in the treatment of chronic pelvic and sexual pain disorders. In the last few years I have co-authored a book “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects their Relationships”. My co-author Susan Bilheimer and I also created a pamphlet entitled “Sixty-four Tips to Relieve Sexual and Pelvic Pain”, as well as a “Pain Trigger Journal”. I have also been elected to the Board of the International Pelvic Pain Society and presented a talk on assessing and diagnosing chronic pelvic pain at their national convention last year in Chicago.
“Secret Suffering”, the paperback, can be ordered through our office. Please see our page on this site regarding Dr. Echenberg’s book or simply contact our office via email to inquire about purchase. I originally founded The Institute for Women in Pain as an umbrella concept that had grown out of my decade of experience specializing in these issues. A number of other independent practitioners from the Lehigh Valley region joined us to form the Institute. We intend to better serve the needs of women in pain (and some men as well) by better coordinating our efforts in clinical care, community education, and research projects. We have since transitioned the Institute into The Echenberg Institute.
In 2001, I was asked to design a fresh approach to chronic pelvic pain (CPP). I had already practiced Ob/Gyn for over 30 years and thought I knew most everything about pain in the pelvic region. However, my investigation into these issues soon began teaching me that the typical gynecologic reasons for pain such as endometriosis, ovarian cysts, adhesions, pelvic inflammatory disease, STDs, etc. were only the tip of the iceberg regarding CPP.
In short, what I found was that studies were indicating that CPP was a much more complex array of multiple “triggers”, both of the organs of the pelvis, as well as all of the supporting structures in the pelvic region. As a matter of fact, I tell my patients now that even though I won the anatomy prize in medical school, I then spent the next 35 years in Ob/Gyn “forgetting” that there were even nerves, muscles, or ligaments in the pelvis.
Our program now is actually a pain management program for the pelvis. According to the International Pelvic Pain Society, CPP is one of the most common medical problems of reproductive aged women, affecting up to 15 – 20% between the ages of 18 to 50. Shockingly, 61% of CPP remains incompletely or incorrectly diagnosed, and millions of women are referred from specialist to specialist and are often led to believe that the problem is “in their heads”.
Importantly, close to 90% of CPP sufferers have some degree of sexual pain as well, thereby affecting their intimate relationships, causing increasing stress and secondary but often severe emotional diagnoses such as depression, anxiety, frustration, anger, and increasing loss of self.
In “Secret Suffering”, I point out that the nervous system itself cumulatively stores memories of all traumatic events throughout a person’s life, such as physical and/or emotional injures, abuse, surgical trauma, intensive sports activities, etc. These are all part of an individual’s past history and provide a guidebook to the nervous system as to how to interpret events that are happening right now. Our nervous system uses this information to not only determine whether you feel pain, but how, when, and where the pain shows up based on what is going on in the body at the time. Eventually, the central nervous system sends out pain or “danger” signals in reaction to even small events.
Many of our patients have had multiple surgeries, invasive testing, and more, in search of the elusive causes of the pain itself. They often have been treated for numerous “bladder infections, yeast infections, ruptured ovarian cysts”, etc. Our approach is to treat the pain as chronic and localize the “triggers”, treat the corresponding nerve pain, muscle clenching (core muscle physical therapy), and utilizing multiple approaches including dietary changes, specific medications, bladder therapies, and work closely with other health care professional for all aspects of pain relief.
Because we see many serious consequences of delays in diagnosis, In future articles I will plan to discuss prevention of CPP, how mothers can help their daughters recognize earlier symptoms, and will also discuss more specifically vulvar and sexual pain issues as well as bladder related pain syndromes.
Pelvic and Sexual Pain Prevention: “Listening to our Daughters”
by Robert J. Echenberg, MD, FACOG
In my last article on female sexual and pelvic pain, I pointed out that we see many young women who have had multiple invasive diagnostic tests and procedures but who continue having debilitating pelvic pain and major problems with sexual intimacy. I also indicated how muscles, nerves, and ligaments play such an important role in pelvic pain sufferers.
By the time we see these women in their 20’s to 40’s and beyond, we find that the narrative of their stories and histories had not started out so severely. Over the past 10 years I have observed and written about typical “profiles” of these women when they were younger that as we look back on their histories we can see patterns of symptoms and behaviors that could have been of great help if only we had had the knowledge and foresight to do so.
Clues to watch for
What are some of those clues that might enable us to “connect the dots” much sooner regarding the future health and well being of perhaps 15-20% of our daughters? The typical prototype of the young woman who ends up seeing us years or decades later is a girl between her mid to late teens and mid 20s, who began having some combinations of significant pain with her menstrual cycles; irritation, pain, or difficulty inserting vaginal tampons; beginnings of increased frequency and urgency of her urinary bladder – maybe being treated for “recurrent UTIs” (bladder infections); irritable bowel symptoms – constipation or hyper active bowels associated with stress or diet; starting to have pain, burning, or itching of her lower genital area – maybe being treated for multiple “yeast or other vaginal infections”; lower abdominal bloating and pain; intermittent back pain; and a history of striving for academic and/or sporting excellence.
Watch for pelvic injuries
Since Title IX, with increased funding for girl’s sports, the numbers of girls in sports has increased dramatically although the levels of training, managing, coaching, and parental knowledge of the physical risks involved in these activities has not always kept up with prevention and early understanding of the consequences of the injuries that are commonly incurred, especially in the girls that do the same one or two sports throughout their young lives.
So we do see in our pelvic and sexual pain program an increasing and significant percentage of histories of gymnastics, dance, cheerleading, soccer, basketball, volleyball, track and field, field hockey, etc. Lower extremity, pelvic, tail bone, and low back injuries are common in all of these and other sports. Studies are now indicating that many of our young girls at puberty are still being trained exactly like their boy counterparts even though their bodies have changed significantly. ACL tears of the knee for instance, become 6-7 times more common in teenage girls than the boys – which often translate into pelvic pain and symptoms of chronic “clenching” of the core muscles.
Certainly only a relatively small percentage of these young women will progress to severe pelvic and sexual pain, but these are the individuals whose parents, coaches and trainers should be educated to watch more carefully, and realize that these combinations of physical and emotional stresses and traumas, and clusters of urinary, lower bowel and “female tract” genital symptoms, although only nuisances or “under the radar” issues at the time, could later result in more serious consequences.
Add to these common events, the traumas of previous or future surgeries, childbirth, physical, emotional or sexual abuses that are so common in our society and one can see why such a large percentage (possibly up to 20%) of young women develops sexual and pelvic pain disorders.
Help us educate the community
Joining us shortly in our pelvic and sexual pain program will be Lanniece Hall, MD, recently board certified in Ob/Gyn having practiced for the past 5 years in Princeton, NJ and Alexandra Milspaw, soon to be licensed in psychology and currently working towards her PhD in sexuality education and counseling. We will all be interested in networking with the community and local colleges and universities in the greater Lehigh Valley to begin seminars, workshops and lectures to various groups of young women, school health services, and even to local sports programs. Any help in this endeavor by interested volunteers to aid in making this type of health education available would be greatly appreciated.
Our book “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects their Relationships” may be ordered through our website, at our office, or by seeking the new paperback edition soon to be found on Amazon.com
Painful Bladder Syndrome and Vulvodynia –2 Major Causes of Genital and Sexual Pain
By Robert J. Echenberg, MD, FACOG
Genital and sexual pain commonly affect up to 20% of all reproductive aged women (teens through 40s). Contrary to the popular media magazines, not all young women are having gloriously wonderful and pleasurable sex and intimacy with their partners, and many of them don’t even realize that the “pain, discomfort, burning, stabbing”, and other uncomfortable symptoms that they experience with genital touch or penetration is even abnormal for them. They have nothing to compare themselves to except that “everyone else seems to be having the perfect sex life”.
Painful Bladder Syndrome (otherwise known as Interstitial Cystitis) and Vulvodynia are 2 of the most common diagnoses related to pain associated with sexual intimacy. As I have written in previous articles for this Women’s Journal, these conditions are so commonly treated repeatedly as recurrent “bladder infections” or long term bothersome vaginal infections such as “yeast or bacterial vaginosis”.
Painful Bladder Syndrome (PBS)
Painful Bladder Syndrome affects up to 15-18% of all reproductive aged women and often starts in the early teen age years. Urinary frequency, urgency, and pelvic pain are the hallmark triad of symptoms associated with this common disorder. In many cases, young girls and women experience what they consider just nuisance problems with their bladder because of needing to void more than the average young person. By the time we see many of these women they have been frustrated by the fact that no one ever informed them that the average “normal” bladder should not have to empty more than 4-6 times in 24 hours. Eyebrows raise when we tell them this, and they tell us that their own “norm” for many years is having to urinate up to 10-15-20 or more times a day. Friends and family have already been teasing them for years about how “small” their bladders seem to be and that they never seem to be able to make a car trip without “pit stops” every 1-2 hours. They also report that they always scout out the ladies rooms at every mall. It is important to note that PBS is NOT the Overactive Bladder Syndrome seen on many TV ads for various medications (the “gotta go-gotta go” condition). Those meds do not actually help PBS.
Diagnosis and treatment of PBS is not really that difficult. There are several simple grading scales with just a few questions regarding bladder and sexual pain related symptoms that are easily scored (we use the PUF scale – Pain, Urgency, Frequency scale). Listening to the patient’s history of pelvic pain, scoring the PUF scale, and then finding that her bladder is significantly tender to touch on examination – tends to easily make the diagnosis.
Treatment of PBS involves lowering the threshold of inflammation in the bladder lining by low acid diet, increasing water intake and using several medications to help “reline” and comfort the bladder lining, as well as specific simple bladder treatments that we commonly do in our office in order to enhance and speed up recovery.
“Dynia” means pain, so Vulvodynia means pain in the vulvar area of the genital tract. The 2 sub-types of Vulvodynia are first, pain in the vaginal opening (vestibule) which is by far the most common reason for “entrance” pain with sexual relations. The second sub-type is “generalized vulvodynia” which commonly involves previous trauma and sensitivity of the pudendal nerves. Pain can be more widespread and deeper with this condition and can affect the whole “saddle area” of the vulva and upper inner thighs. Generalized vulvodynia is variously described as “crawling, clenching, searing, painfully itching, stabbing, vice-like, hot-poker like, etc.”
Vaginal opening pain commonly is associated with Painful Bladder Syndrome and can be so severe that even a light touch with a Q-tip to that area can cause extreme discomfort. Treatments vary for all of these vulvar pain conditions but it is important to also treat their “triggers” such as PBS and pelvic floor muscle clenching.
It is easy to see, therefore, that pain associated with sexual penetration can involve various levels of conditions, from highly sensitive skin, reactive clenching of deep pelvic floor muscles, and finally “bumping” into a very sensitive bladder. In our pelvic pain program we look for all of these conditions and individualize a treatment program. Dr. Lanniece Hall and I welcome patients with any of these difficult and challenging health issues. Our goal is to listen, diagnose, treat all specific findings, and above all, improve your quality of life.