TURN UP THE LIGHTS: THE FUTURE OF CHRONIC PELVIC, SEXUAL, & GENITAL PAIN CARE

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.
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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. 
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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.
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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:
 

• Write a personalized, one page letter directly to ACOG. Download an example letter to help you:

Personal experience
Loved one with a personal experience
Public Advocate (no personal experience but want to contribute to the campaign)

• Sign our digital campaign to incorporate CPP into core curricula
• Sign our digital campaign to create guidelines and objectives for PN and PGAD
• Send ACOG peer-reviewed journal citations. Head to your local university and ask if you can have a guest account to find peer-reviewed/scholarly articles in their Professional Journal database. Have them show you how to find only peer-reviewed articles on the topics of Pudendal Neuralgia and PGAD. Save the articles you find that are available and save the citation information for those that are not. Email your findings to SCarson@acog.org

• Talk about it! Tell your doctors, your nurses, your hospital staff, your family, your friends, your roommates, your college professors what you’ve learned. Share about it on social media. Raise the public consciousness about chronic pelvic pain conditions so that they gain more institutional support, which will promote further research.