3 Articles by Dr. Echenberg in Lehigh Valley Woman magazine
Chronic Sexual and Pelvic Pain Disorders – How So Many Women Suffer in Silence
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’s section on our newly created web site www.instituteforwomeinpain.org. The Institute for Women in Pain is an umbrella concept that has grown out of my decade of experience specializing in these issues. Numbers of other independent practitioners from the Lehigh Valley region have 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.
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
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
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
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
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
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
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. Please contact Alex
Milspaw at firstname.lastname@example.org.
information see our website: www.instituteforwomeninpain.org
Our book “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects
their Relationships” may be ordered through the website, at our office, or
seeking the new paperback edition on Amazon.com
Syndrome and Vulvodynia –
2 Major Causes of
Genital and Sexual Pain
By Robert J. Echenberg,
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
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
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.
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.
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
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.”
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.