A Callout for OB-GYN Education Reform
WHO IS ACOG AND HOW DO THEY INFLUENCE THE PROTOCOL FOR PELVIC PAIN?
The American Congress of Obstetricians and Gynecologists (ACOG) is the companion organization to the American College of Obstetricians and Gynecologists. Both entities are non-profit professional membership organizations for physicians providing health care to women. With over 58,000 members both The College and ACOG are recognized as the nation’s leading authority on all things women’s health. Though based out of Washington D.C. ACOG is made of various districts and sections that operate throughout the US.
The purpose of The College and ACOG is to advocate for quality health care for women, maintain the highest standards of clinical practice, maintain the highest standards of continuing education for their members, promote patient education, and increase public awareness and awareness among their members of the changing issues facing women’s health care. ACOG in particular is dedicated to the advancement of women’s health care as well as the interests of its members through medical education, research, practice, and advocacy. Operations of The College and ACOG are overseen by member elected Executive Committees, Executive Staff, and Board of Trustees.
Because of the nationally and internationally recognized authority of these organizations, they play a significant role in the influence of academia and education for students in residency who are in training to become board certified Ob-Gyn physicians. The head of The College’s Education division oversees the Council on Resident Education in Obstetrics and Gynecology. Currently, Sandra A. Carson, MD holds this position.
They also play a significant role in the influence of clinical guidelines for women’s health providers through professional materials that are made available to their members. The Vice President of Practice Activities oversees these clinical guidelines. Currently Dr. Chris Zahn is holding this executive staff position. Previously, Hal C. Lawrence III, MD held this Practice Activities position and in 2011 was appointed The College’s Executive Vice President, a position that puts him at the helm of The American College of Obstetricians and Gynecologists.
ACOG STRENGTHS & WEAKNESSES
As one can imagine, “all things women’s health” encompasses a vast array of subjects and challenges. From cervical cancer to health care reform. From pregnancy, labor and delivery to hysterectomies. From infertility to birth control to member medical liability. From mammograms to breast feeding to sexually transmitted infections. Clearly ACOG and The College (we’ll collectively call them ACOG now) is tasked with an enormous undertaking.
Focusing in on the category of “Gynecologic Problems” ACOG does have guidelines on chronic pelvic pain found in the Fourth Edition Resource Manual, copyright 2014. While the section is very short, coming in at under a page in length, there are several reasons to be hopeful that ACOG is beginning to steering things in the right direction. The guidelines say that chronic pelvic pain is common among women. And requires a multidisciplinary approach in its diagnosis and treatment. Bladder, colorectal, neurological, musculoskeletal, abuse, pelvic surgeries and traumas are all listed as potential sources of the pain. Though psychological causes are also listed, they directly instruct the reader not to ignore the significance of the pain despite normal or inconclusive physical exams, evaluations, or findings. Management of the pain is to involve addressing the underlying causes. Any cause found not to be gynecological in nature should be referred to an appropriate specialist. If the source of pain cannot be determined the manual refers readers to Part 4 on managing chronic pain, which is mostly information about opioids and anti-inflammatory medications.
In addition to the general guidelines on chronic pelvic pain, ACOG has also released a 2006 reaffirmed Committee Opinion on Vulvodynia, a 2013 reaffirmed Practice Bulletin on Female Sexual Dysfunction, and guidelines on vulvar skin disorders. These four resources in combination available to women’s health practitioners cover good ground in at least defining terms like vaginismus and vulvodynia as well some starting places for diagnosis and treatment. Somewhat disconcerting is my personal experience with these disorders in 2007 and 2008, after information would have been made available on them; yet I experienced looks of confusion from multiple practitioners who didn’t seem to be aware these terms even existed.
ACOG, according to a recent letter from Dr. Chris Zahn Vice President of Practice Activities, strives to create practice guidelines and recommendations that are “heavily based upon published medical literature, mostly from peer-reviewed journals”. Dr. Zahn goes on to say that while the research takes time, it is essential that their recommendations reflect high quality evidence and data. ACOG’s strict adherence to peer reviewed medical evidence and the vast subject areas within women’s health for which ACOG must advocate, promote, and educate could be counted among its strengths. Though, as is often the case, they could also very well be counted as two of its greatest weaknesses.
Chronic pelvic pain triggers go far beyond the scope of the currently available guidelines, opinions, and bulletins released by ACOG, even for the more common disorders that have been known to affect up to 20% of women in the U.S. alone. And, completely absent from all of these resources are two disorders in the pelvic region: Pudendal Neuralgia and Persistent Genital Arousal Disorder (or PGAD). While these conditions are thought to be rare by some practitioners, it is unknown the actual incidents in the general population. Research on the estimation of these conditions needs to catch up with actual occurrences, and account for the many individuals who present with these conditions but are misdiagnosed or ignored. Whatever the unknown figure may be, the effect on women (and men) is life altering, significantly reducing quality of life on a day by day basis, not just as it relates to sexual pain and discomfort.
Pudendal Neuralgia is characterized by sharp pain surrounding the pudendal nerve due to dysfunction or compression of this nerve. The pudendal nerve stems from the sacrum (the triangle shaped bone at the base of the spine that your tail bone is attached to) but it runs throughout the entire pelvic region. Other symptoms can include numbness, tingling, burning, and incontinence (loss of bladder or bowel control). If you feel like you need a visual tour of the pudendal nerve “google” search ‘pudendal nerve tour’ and then click on videos. (Also view this informative video by Dr. Valovska) You will gain immense respect for this nerve immediately and better understand how its injury or dysfunction could indeed cause exquisite pain and ongoing distress. Sufferers can experience PTSD due to mind-altering pain levels. Many lose the ability to work and function, being house-bound and bed-ridden. Suicide is, unfortunately, the only option many of these sufferers feel like they have, especially if no one can make sense of their pain.
Persistent Genital Arousal Disorder (PGAD) has also been thought of as Restless Genital Syndrome, as it seems to mimic other neurological disorders such as Restless Leg Syndrome. PGAD is characterized by ongoing, spontaneous, uncontrollable genital arousal that is not related to sexual desire. This persistent arousal of the genitalia is sometimes completely debilitating for those who suffer from the symptoms. Interfering with everyday tasks of life, sufferers often experience depression, anxiety and anxiety attacks, and feelings of distress and hopelessness leading to suicidal ideation and action.
THE CAMPAIGN TO REACH ACOG
Project Angel, spearheaded by Pudendal Neuralgia sufferer & artist-advocate Atara Schimmel, has been tirelessly working to bring these disorders to the attention of ACOG, requesting that these and other Chronic Pelvic Pain disorders be not only recognized but also that clear guidelines, educational objectives, and curricula be put into place for the education of both currently practicing women’s health providers and the up-and-coming generation of providers who are in the classroom and residency programs. Many personal letters and testimonies from sufferers have already been received by ACOG. We want them to see that real women and men with real stories are being impacted. And we want them to know that many have already given up. Insufficient treatment options, lack of compassion and understanding on the part of providers, and the general disinterest on the part of the institution and the public leaves sufferers with very few choices. And some of them opt to take their own lives for the lack of a better option.
Download the most recent response letter from Dr. Chris Zahn at ACOG to the Project Angel campaign. We are grateful that ACOG chooses to respond to us and that they relay their shared interest in addressing the urgent issue of debilitating pelvic pain. We respectfully disagree, however, that there is not enough scientific publications to make recommendations. At least under their “Level C” conclusions which are based on consensus and expert opinion, or under their “Level B” conclusions which are based on inconsistent scientific evidence.
For the research of this blog, I spent about two hours at my local university searching for only peer-reviewed medical journal articles on both Pudendal Neuralgia and PGAD (notice the letter from Dr. Zahn makes no mention of PGAD though we specifically asked for it to also be addressed). In that time I was able to find over 15 published articles, most of them in the last 5 years, available through that university alone on Pudendal Neuralgia. And over 20 on PGAD.
HOW TO GET INVOLVED
We will continue to put respectful and appropriate pressure on ACOG to hear our pleas and create change. We do it for the millions of women and men who have already experienced chronic pelvic pain conditions and yet are unable to find OB-GYN practitioners who are able to make sense of their pain. And for the women and men who will experience CPP at some point in the future, that they might have access to the so desperately needed care that we should have received but couldn’t find.
We are petitioning ACOG to address two very specific requests:
1. Incorporate vulvovaginal and pelvic pain conditions into core curricula of gynecology and obstetrics and continuing ed.
While ACOG may be on the right track given the resources they have released via their guidelines, resource manuals, and bulletins, we are not aware that they are incorporating this vital information into the core curricula of every gynecologist’s and obstetrician’s education. And while the current information is helpful, it is lacking considerably. It is crucial that practitioners and students in their residencies and fellowship programs receive training in the assessment and management of pudendal neuralgia, persistent genital arousal disorder, vulvodynia, interstitial cystitis, endometriosis, vestibulodynia, penile pain, ejaculatory pain, irritable bowel syndrome, pelvic floor dysfunction and a variety of peripheral neuropathies that occur commonly in the pelvic region. Lichen simplex, lichen sclerosis, and lichen planus are common skin disorders affecting the genitalia and also must be recognized. Many CPP patients experience multiple conditions that are interrelated. A multidisciplinary approach to diagnosing and treating vulvovaginal, penile and pelvic pain is imperative.
2. Create guidelines, educational objectives, and curricula for Pudendal Neuralgia (PN) and Persistent Genital Arousal Disorder (PGAD)
While ACOG may currently recognize some CPP conditions in their guidelines such as vaginismus and vulvodynia, they don’t recognize PN or PGAD in their guidelines. We want to see these two disorders be specifically recognized by ACOG and guidelines and educational objectives be created for addressing them. Therefore also including them into the core curricula for students and practitioners as we are requesting in our first point above.
We fully realize that these requests require time, energy, effort, and resources from ACOG and that this, along with their many other responsibilities, is a massive undertaking. We support them, we will send them our findings, we can recommend doctors to them that are having successes. But simply put, all OB-GYN practitioners need to know the basics of all CPP disorders and the basics of the multi-disciplinary approaches that are used to treat them. Perhaps there needs to be a re-structuring to allow for specialists in CPP related conditions that are either under the ACOG authority or under the authority of a different entity. But there is no excuse for any OB-GYN to tell a patient that pain "must be in their head". It must become the standard norm that all OB-GYN practitioners recognize CPP and its interrelated triggers and at least be aware of the treatment modalities available so they can make appropriate referrals and recommendations.
Please join us in the campaign! More voices from many different directions will influence the changing of the tide, the paradigm shift that will ultimately turn something this massive in a whole new and better direction.
Here’s how to help:
Loved one with a personal experience
Public Advocate (no personal experience but want to contribute to the campaign)
PAINFUL SEX PREVENTION
Prevention is a noun. An action. Something we have to do. While the triggers or reasons for persistent painful sex and chronic pelvic pain disorders can be complex, interconnected, and varied let's start with what we do know.
Tight and clenched stomach, buttocks, legs and chest-breathing, carried over into everyday tasks and daily living, can be harmful to the pelvic floor. And a tight, tense, and too "turned-on" pelvic floor will eventually lose its proper function.
Many sporting activities require these tight body positions in order to perform them well. Dance, running, gymnastics, track, soccer, martial arts, and others place heavy emphasis on core strength, tight body positions and breathing from the chest instead of the abdomen.
Along with overly clenching techniques associated with training for many of these sports, there have been more injuries to young women over the past number of years with increasingly competitive young female athletes. Injuries to ankles, knees, hips, tailbones, and straddle type vulvar traumas all have contributed to chronic pelvic and sexual pain, as well.
The book entitled: “Warrior Girls: Protecting Our Daughters Against the Injury Epidemic in Women’s Sports” by Michael Sokolove points out the consequences of cumulative injuries in young women, not necessarily solely from the lack of appropriate training over the course of their pre and post pubertal years, but also by the exuberance and passion and competitiveness that so many girls exhibit during the course of their athletic years. He points out that so much has been learned in the fields of sports medicine and training that could be preventative for injury, but that commonly, many factors prevent the implementation of good practices by the coaches, trainers, and even the parents of these young women.
These cautions are certainly not meant to endorse quitting sports all together. Instead, we are asking you to be aware that you need to let clenched body positions go when you walk out of practice or performance. If you are a family member or friend of a young female athlete who may have the early symptoms of pelvic pain, try to talk to them about the consequences of holding clenched body positions even though this is quite counter-cultural right now, because it seems everyone is out there trying to actually “strengthen their core”.
If you are injured or feel pain, don’t allow yourself or a family member or friend to “push through the pain” to keep performing. If you would like to learn about our prevention and education initiatives or would like to donate to the program please visit The Foundation for the Prevention of Chronic Pelvic Pain at thefpcpp.org (Now teamed up with Bridge for Pelvic Pain).
Watch the CHapter on Prevention:
View Chapter 1 of the Four-Disc DVD Set Healing the Pain 'Down There': A Guide for Females with Persistent Genital & Sexual Pain.
Chronic pelvic, genital, and sexual pain patient, Stephanie Yeager, welcomes you to join her on the journey of healing. While you may feel alone in your suffering The International Pelvic Pain Society, The Interstitial Cystitis Association, The National Vulvodynia Association, The Endometriosis Association and The Institute for Women in Pain would all tell you that you are among tens of millions suffering from pelvic pain, genital pain, and sexual pain.
The long-awaited Video Guide Healing the Pain 'Down There': A Guide for Females with Persistent Genital & Sexual Pain is now available for purchase.
A woman with chronic pelvic pain brought together a team of multidisciplinary professionals to create this instructional and educational DVD guide for those suffering with “pain down there”. The team represents over 50 years of experience in women’s health related fields including OB/GYN, physical therapy, mindfulness techniques, and human sexuality with their focus being on the treatment of pelvic pain. This educational video is intended for women of all ages who are experiencing pain during intercourse who want to learn why they have their symptoms and learn strategies to improve them. This video is also for teens and young women who may be at risk for developing these symptoms, and for clinicians who are practicing in the field of women’s health.
“Groundbreaking … “
Jill Osborne, MA
ICN Founder & CEO
“A well designed comprehensive view of pelvic pain from a multidisciplinary perspective and clear options for returning to health and well being.”
Sandra Hilton, PT, DPT, MS
“A very important resource for many women...”
Frank Tu, M.D., MPH
" Respected pelvic practitioners create a road map to navigate the challenging path of healing pelvic pain."
Dustienne Miller PT, MS, WCS
Paindownthere.com knew other patient advocates and the loved ones of those affected by chronic pelvic pain conditions would feel the same way we do about the desperate need in our world for more education and prevention initiatives. In this blog, we want to make sure you are aware of the international non-profit, Bridge for Pelvic Pain. We have specifically teamed up with their Prevention-Education program.
When each video guide Healing the Pain 'Down There': A Guide for Females with Persistent Genital and Sexual Pain is sold a portion of the proceeds go directly to the Prevention-Education initiatives of Bridge for Pelvic Pain. This portion equates to about 20% of the net profit of the video (DVD or downloaded). Paindownthere.com and the video guide we have put together for sale was originally born out of the deep desire to fund prevention and to further public and practitioner eduction. We are so exited to be able to team up with a charitable organization that is doing just that on a global scale.
You can also donate to Bridge for Pelvic Pain's Prevention-Education program directly by going to their website.
Other programs that Bridge for Pelvic Pain provides includes:
Education: Funding provides medical education from field experts to global communities
Resources: Building an international and multi-language list of health care providers and support groups world-wide
Scholarships: Providing scholarships through integrative health care providers to help off-set the rising financial costs of care.
To learn more click here.
We also encourage you to educate yourself regarding the other worthy non-profits for specific conditions that we recommend. To find that list click here and look for Looking for other worthy causes?
Is your posture and the way that you breathe negatively affecting your pelvic floor, meaning contributing to pain and dysfunction, or positively affecting your pelvic floor, meaning contributing to function and health in the pelvic region?
Stephanie Yeager: Passionate about spreading the word of hope and healing for those like her, influencing a paradigm shift in the medical community toward greater understanding of chronic pelvic pain disorders, and prevention initiatives that may protect young women before onset can occur.