Take a look at these personal care tips from Dr. Echenberg. Triggers that increase your pain sensitivity could be hiding in your self-care routine.
1. CHANGE YOUR PAD OFTEN
Because the pH balance of the vagina changes during your period, you can be more susceptible to vaginal infections during this time. In addition, damp pads and blood can cause irritation and also open the door for infection. As a preventative, change your pad every two hours. Be careful of tampon use as they soak in far more irritating fluids than pads and the insertion of tampons alone can cause pain to the already inflamed and sensitive genital tissues. Be sure to use menstrual products that are free of perfumes and any harsh ingredients. We recommend: Natracare
2. USE UNSCENTED LAUNDRY PRODUCTS
Perfumed laundry soap, fabric softener, and scented dryer sheets can inflame the genital area. Look for versions of your favorite products that are unscented and free and clear of dyes. Many store brands even have a free and clear version of these products. It also might be worth considering alternatives like wool dryer balls and DIY recipes so you know exactly what's inside.
3. WASH YOUR VAGINAL AREA WITH WATER ONLY
That's right! It might sound strange but the external genitalia doesn't need any more than water. Soap can upset the sensitive balance of the vaginal flora and increase symptoms. If you feel like water just isn't enough you can try unscented soaps. But be aware that it's possible to have a sensitivity to glycerin (the main ingredient in many unscented soaps) so take note of any irritation. There are glycerin-free alternatives but pay close attention to their other ingredients.
4. BEND OVER TO RINSE OUT SHAMPOO
When you rinse your hair in the shower be sure to bend over in a way that shampoo can't run down over your vulvar area. Chemical ingredients, perfumes, and dyes can cause an adverse reaction when coming in contact with your genitals.
5. WIPE THE RECTAL AREA PROPERLY
Vaginal infections can be caused by bacteria from the rectum. Always wipe from front to back and change your underwear when possible after a bowel movement as bacteria can remain on the underwear.
A summary of the Commentary by Melissa A. Farmer “What is special about the vulvar vestibule?” Copyright 2015 by the International Association for the Study of Pain, March 2015, Volume 156, Number 3
If you were to take a mirror and take a look at the opening of your external genitalia, you would be looking at your vulvar vestibule. The vulvar vestibule (or “entrance way” to the vagina) includes from the clitoris to the urethral opening (for urinating) to the vaginal opening as well as portions of the inner lips on either side of the vaginal opening. Many incorrectly refer to the whole area as “the vagina”. Actually the skin of the vestibule lies between the vaginal lining and the outside hair bearing skin. If you need a little help on vocab and anatomy - check out this blog.
It is also really important to realize that the most common reason for entrance pain with intercourse, tampon use, vaginal speculum or just light touch from clothing is the common condition known as vulvar vestibulitis or better called vulvar vestibulodynia. (“itis” means inflammation and “dynia” means pain).
So back to looking in the mirror. You’ve probably never whispered “you’re special” to your vulvar vestibule. But it is. Not just for its role in the reproduction of life, but because the external tissues in that area are actually very different from other mucosal surfaces in the body. Mucosal surfaces are those bodily tissues that excrete mucus like the inside of your mouth and the inside of your nose. The difference is in the “profile” of the immune cells in that area, meaning the type and the amount of the cells of the immune system. Given how important the external genitalia is to the reproduction of life, we would suspect that it would indeed be a place that needs some extra immune system defense. This same observation holds true for other species as well, not just humans.
We also know that one of the methods the immune system uses to attack what it identifies as a threat to the system is inflammation. And as a result of inflammation we often feel pain. It makes sense then that pain brought on by inflammation at the vulvar vestibule would be different than the pain brought on by inflammation at other mucosal sites. Recent research seems to indicate that pain felt in this area is determined by 1) the amount (not simply the presence alone) of low grade inflammation, 2) altered vulvar nerve innervations, meaning an abnormality in the distribution of impulses of the nerves in that area, and 3) genetic susceptibilities that contribute to abnormal inflammatory cascades (chemical messengers that ramp up the immune system and cause a domino effect).
Vagina! (You are definitely more complicated than we thought!!!)
Just making sure you’re still with me here, this information is dense but it’s how we know persistent genital, sexual, and pelvic pain has a MEDICAL and SCIENTIFIC explanation.
Ok, back to the mirror. We know that the vulvar vestibule is derived (or made from) the endoderm. When we were just embryos in the womb, the inner-most layer of that embryo is called the endoderm. Do you know what else was derived from the endoderm? The bladder and urethra and also the gastrointestinal tract. It is possible that these other structures also have unique immune profiles, similar to that of the vulvar vestibule.
Let’s briefly recap: The vulvar vestibule has a unique immune profile compared with that of other mucosal sites. An immune/inflammation response at the vulvar vestibule isn’t enough to cause pain. Pain is determined by the magnitude of the immune response/inflammation. The vulvar vestibule, the bladder, and urethral linings are all derived from the endoderm and could share immune profiles.
One last piece of information that’s critical to note: the most recent research is finding that in the clinical setting, self-reported pain levels at the vulvar vestibule are closely connected with the release of an immune system messenger known as cytokine. That means when research study participants reported increased pain, the presence of cytokines in the examined vulvar tissue also increased.
What does all of this really mean? It means that we know that chronic genital, sexual, and pelvic pain is real in a clinical and biological sense. We of course recommend treatment modalities that work from the top-down to address the mind-body connection and help turn the central nervous system pain ‘volume dial’ down. But we also want to highlight the science behind the pain and the need for bottom-up approaches in line with current research and the desperate need for earlier diagnosis and appropriate treatment modalities and medications to counter these inflammatory and painful processes.
2. Interstitial Cystitis (IC)
Unlike the kind of cystitis that can be treated with antibiotics, IC is a chronic inflammatory condition of the bladder wall. Some of the symptoms are an urge to urinate frequently, stinging the area surrounding the urethra, increased nighttime voiding (urinating), and a variety of pelvic and sexual pain symptoms.
3. Irritable Bowel (IBS)
Constipation and/or diarrhea are symptoms of this syndrome. Some women find that IBS flare ups correlate to an increase in vaginal irritation. Therefore foods that aggravate the bowel may also cause vaginal symptoms.
4. Lichen Sclerosis
This is an inflammatory chronic skin condition most common in the external genital area. Symptoms may range from none (for years) to mild or severe itching and irritation. Lichen Sclerosis does appear to be relatively prevalent in women with vulvodynia and sexual pain disorders. It can cause splitting and "paper cut" type tears in the region around the vaginal opening.
5. Myofascial Pain Syndrome
Myofascia are the muscles and connective tissue in the body. When in spasm, knots and "trigger points" develop that need to be released to eliminate pain and restore function. These trigger points in the pelvic myofascia can cause sexual pain.
6. Pelvic Endometriosis
Endometriosis occurs when endometrial cells, normally found only in the uterus, become imbedded in locations outside the uterus. These locations are usually within the pelvic cavity on reproductive organs, supportive ligaments, or structural systems like the bladder or bowel.
This misplaced tissue forms growths that look like dark spots. These growths respond to the menstrual cycle and break down and bleed each month, the same way the lining of the uterus does. This causes cyclical pain and inflammation - called dysmenorrhea. Additionally, the body’s immune response to this internal bleeding and breakdown of blood and tissues begins to cause scar tissue and adhesions (affected pelvic organs or structures adhering to one another) which can also cause ongoing pain.
Endometriosis affects millions of women but is often over diagnosed as the primary cause of pelvic and sexual pain. If the pain or deep sexual discomfort is intermittent and all month long, even though it may become worse leading up to the menstrual period, endometriosis may not be the primary reason for the pain. If you have been diagnosed and treated for endometriosis and you don't begin to get signifiant improvement either after medication or surgical treatment, insist on further evaluation for bladder, bowel, musculoskeletal, or nerve related causes of your pain.
7. Pelvic Floor Dysfunction
The pelvic floor encompasses all the muscles that surround and support the pelvic organs (uterus, bladder, and lower bowel). To function appropriately, these muscles must be toned. However, elevated tone in the pelvic floor muscles, making them too tight, tense, and "turned on" can result in painful sex and difficulty with bladder and bowel function. On the other hand, too little tone can lead to bladder and bowel incontinence (leakage) or prolapse (falling down, out of normal position). Pelvic floor dysfunction can refer to either too much or too little tone.
8. Previous life-long Pelvic Trauma
Events such as physical, emotional, and sexual abuse, surgeries, accidental injuries, and cumulative aggravating structural factors can play a role in sexual pain. Additional possibilities include years of various sports activities such as gymnastics, cheerleading, track & field, soccer, ballet dancing, horseback riding, skating, etc. More and more women have engaged heavily and competitively in these sports over the past few decades, making them extremely vulnerable to these types of bodily stresses. The nervous system bio-chemically "imprints" and "remembers" these accumulated traumas, and any or all of these may predispose a young woman to sexual and pelvic pain disorders even years later.
9. Generalized Vulvodynia
Generalized vulvodynia is a subset of vulvodynia, it is less common than vulvar vestibulodynia (see below) and often very difficult to successfully treat. It is a deeper, more generalized pain. Pain can occur spontaneously (unprovoked) or in response to touch or pressure (provoked, such as by intercourse). Pain emanating from the pudendal nerve and its distribution may be a significant contributor to this condition in some cases (pudendal neuralgia).
10. Vulvar Vestibulodynia (Vestibulitis)
This condition causes pain and inflammation at the vaginal opening. Women describe the pain as burning, itching, raw, sandpaper, ground glass, and stinging. It is commonly mistaken for vaginal yeast infections and is often treated incorrectly. Vestibulitis is the most common reason for entrance pain (painful sex) in reproductive-aged women.
Specialized Women's Health Physical Therapy: What ELSE to Expect on your First Visit
Follow up video blog answering some questions from our first video post about what to expect at your very first pelvic floor physical therapy session. Individual experiences will vary. But listening to internationally recognized women's health physical therapist Karen Liberi, MS, MPT, WCS may help relieve some fears and anxiety, especially surrounding the pelvic floor muscle evaluation.
If you're having difficulties with sexual pain then physical intimacy with your partner is likely a challenge. Here's a few tips for maintaining your sexual relationship even when intercourse may not currently be an option.
Schedule a weekly date with your partner to maintain emotional intimacy. Set aside a few hours to snuggle as you watch a movie or share an adventure together. Keeping emotionally connected with relieve the tension that can be caused by difficulties surrounding sex. Alternate with your partner to select activities you both enjoy.
There are many exiting and fun ways to have sex even if you are unable to have intercourse. Set aside the idea that intercourse is the only "real" way to have sex and intimacy. Open your mind to sharing other types of sexual activity.
Regularly Engage in Sexual Activity That Doesn't Cause Pain
Once you together find several sexual activities you can share in that are fun and exiting but don't cause pain, engage in these activities regularly. Many women lose interest in sex due to the pain they experience. But chances are you will eventually enjoy sex again if you can relax and be willing to engage in sexual activity with your partner that does not cause genital pain, sexual pain, or pelvic pain.
Realize That Intimacy is Two People Working Together to Please Each Other
Intimacy is the result of two people working together to please each other. While some men may say that only intercourse is "real" sex, many admit that they get aroused by making their partner exited, with or without intercourse.
EXERCISE ROUTINE TIPS FOR THOSE WITH PELVIC PAIN
"Toning up" may actually be a "sexual downer" on body parts that need to be the most relaxed and comfortable for those intimate moments.
2. Seats and Clothing
Find the softest, most pliable seat possible and wear loose-fitting clothes when riding a bicycle, motorcycle, or scooter. Better yet, consider giving up these activities. The pressure against your already sensitive genital area can cause symptoms to flare up.
3. Give Up the Attitude of "Playing Through the Pain"
While coaches often urge athletes young and old to "play through the pain", it's vital to abandon this attitude when it comes to enduring painful sex as an adult. Please don't believe that you must have sex to please your partner despite the pain and if you don't something is fundamentally wrong with you. Nothing could be further from the truth. A loving partner would never want to cause such suffering.
4. See a Pelvic Floor Physical Therapist
More and more physical therapists (PTs) are incorporating pelvic pain treatment into their practice as the urgency of effectively treating sexual pain increases. A growing number of doctors consider pelvic floor physical therapy a vital component of a complete treatment plan for sexual pain. Specialized pelvic floor PTs utilize various methods to release trigger points in the body. Trigger points develop through contraction or spasms in the muscle groups surrounding the vagina, bladder, and lower bowel. Using manual pressure, biofeedback, and other techniques these health care providers can often aid sufferers. Patients are eventually given techniques to maintain wellness at home.
Vaginismus is a condition that affects the muscles of the pelvic floor and involves involuntary spasming or clenching of the pelvic musculature. Typically this reactive tightening of the muscles is in response to insertion or the attempt of insertion of an object into the vagina, making vaginal intercourse painful and sometimes impossible. Thankfully, this condition is becoming more and more recognized by the mainstream media. But coming along with it are some misconceptions about vaginismus that we'd like to clear up.
Myth #1: Kegels Cure Vaginismus
Kegels, done correctly, are a great strengthening technique for the muscles of the pelvic floor for many women and men. However, someone who is struggling with vaginismus is not a good candidate to begin practicing kegels. While kegels may be introduced later on to help the overall pelvic and core musculature function together during certain body movements, they should be avoided at first. The focus of treatment should instead be on the ability to consciously recognize and relax the pelvic floor muscles. It is best to receive this treatment under the direction of a specialized women's health physical therapist who can guide you through imagery and biofeedback techniques. Also, consider our physical therapy digital download chapter packages to assist you at home.
Myth #2: Vaginal Dilators are Used to 'Stretch' the Muscles
Dilators are an incredibly helpful tool for those with vaginismus. Their function in the treatment process, however, isn't so much to "stretch" the tight muscles of the pelvic floor. The pelvic floor muscles are already quite capable of stretching far beyond what is needed for sexual intercourse (think, delivering a baby). The problem with vaginismus is that the central nervous system (the brain and all its related systems including the spinal cord and nerves) is sending signals to the pelvic musculature to brace itself for what it considers or 'remembers' to be painful: vaginal penetration. So dilators work by desensitizing the central nervous system (see Myth #3 for more on this) and by providing trigger point release (intentional pressure to points of muscular tension for the relief of pain, much like in your neck or shoulders). To learn more about the science of chronic pelvic pain and the use of dilators in the treatment of vaginismus, purchase the DVD Healing the Pain Down There: A Guide for Females with Persistent Genital & Sexual Pain. We recommend dilators from Syracuse Medical Devices as they are made of medical grade material and have a consistent length. It is important to have a long enough dilator to be able to reach the second layer of the pelvic floor musculature even with the smallest dilator in diameter.
Myth #3: You Just Have to Try to Relax and Keep Practicing Sex
If you continue doing as you have been doing - having sex that is painful, then setting yourself up in that same environment with your partner will actually perpetuate or re-enforce the pain - because your mind is already anticipating the pain - it is a known response and you cannot just "force" a relaxation response instead. But if we remove the “red flags” from the brain and place YOU IN CONTROL using the dilators, we can re-train the brain to realize that there doesn’t need to be a “fight or flight response”, we can begin to “unwind” the nervous system. When you start with an extra small dilator and can insert and move it and do self stretches with low to no pain - then the brain starts to realize that - OK - that wasn’t so bad and the secondary responses of muscular tensions ease also allowing for less pain and your overall confidence level with repeated successful sessions with the dilator allows you to become ready for return to intercourse with low to no pain. It is important that you abstain from intercourse (not intimacy) during dilator sessions until you can progress to the proper size. So essentially what happens is you change the perception in your brain about the health of your vagina, decreasing the sensitivity of your nervous system to keep the muscle tension in check to help achieve a good end result.
"doing mode", you're operating almost exclusively in the sympathetic branch of your autonomic nervous system. This system is associated with the "fight or flight" response, shallow breathing patterns, muscle tension, and increased heart rate and blood pressure. These stress responses of the body not only negatively influence the pelvic floor muscles but also the overall pelvic region including bladder and bowel function, both common triggers of genital, sexual, and pelvic pain.
2. Pelvic Traumas, Injuries, or Surgeries
Injuries to the pelvic floor region caused by childbirth, previous pelvic surgeries, falls on the coccyx bone, and other accidental traumas to the region such as straddle injuries can all contribute to the development of chronic pain in the pelvis and genital area. Take for instance, the condition once known as "bikers syndrome" that affects long distance bike riders. Cumulative targeted pressure on the pudenal nerve overtime can cause damage to the nerve. This particular nerve branches out into the entire vulvar region and can therefore emit painful stimuli anywhere in the pelvic region, not just at the "sits bones".
3. Present or Past Physical, Emotional, or Sexual Abuse
Memories from past (or current) abuses are stored in pathways along the central nervous system, and even in particular muscles, especially the psoas muscle. The psoas muscle has a direct and neurological connection to the pelvic floor muscles. These bad memories that are stored by the nervous system awaken when it is feeling threatened or when trying to protect itself. Even when attempting consented, pleasurable sex, the nervous system can interpret this environment as threatening. Protective measures include muscles tension and clenching (which leads to pain, which leads to the fear of pain, which leads to further clenching), and the over-sensitization of the pelvic nerves.
4. Participation in Competitive Sports
Many popular sporting activities require tight, clenched body positions and breathing from the chest in order to perform. If we are taught by these sports (or cultural influences) to suck in our stomach and breathe from the chest and clench our buttocks at all times as a matter of "good posture" this can, over time, be detrimental to the health and function of the pelvic floor. In addition, young women who participate in sports are more likely to experience sports-related injuries such as injuries to knees, ankles, legs, and hips. If a knee, for instance, is favored for a long enough period of time the opposite pelvic area takes on more stress and can contribute to pain due to compensatory patterns.
5. Genetic, Hormonal, & Dietary Influences
Structurally the body is not symmetrical and consequently curvatures of the spine, leg length difference, being left or right footed, all have a bearing on the long-term cumulative stress on one side of the pelvis or the other. Genetic and hormonal influences can also put us at risk for other triggers commonly associated with pelvic, genital, and sexual pain. For instance, endometriosis, irritable bowel syndrome, and interstitial cystitis (painful bladder syndrome or "IC"). The dietary decisions we make also influence how and when these triggers manifest in the body. Foods can promote the inflammatory responses contributing directly to pain, but also inhibit the immune system from functioning properly.
Independent research findings from a randomized (participants chosen at random), double blind (neither the researchers nor the participants know if they are using the placebo or the magnetic dilator) study were released just last month on the VuVa magnetic vaginal dilators.
24 women with vulvar pain participated in the study. The women used both the Vuva magnetic vaginal dilators and the placebo vaginal dilators (looked and felt the same but didn't contain magnets) with a 7 day period in between in which no treatment was given. Women were asked to report their pain intensity levels before and after the use of each dilator.
Women who used the VuVa magnetic dilator reported a decrease in pain levels twice that of the placebo dilator during a tampon test. Women using the Vuva magnetic dilators experienced an average 28% decrease in pain levels during a cotton swab test. And 40% of the women reported an increase in the frequency of sexual intercourse during the study while using the Vuva magnetic dilator as compared with only 10% using the placebo dilator.
Based on these findings, the independent research study concluded that Vuva magnetic dilators are a safe and effective treatment of vulvovaginal pain, performing significantly better than the placebo dilators.
Each Vuva magnetic dilator is created with soothing Neodymium magnets to increase blood flow and add elasticity to the tissues. The dilators, which come in graduated sizes, can be used 1-2 times per day by simply allowing the dilator to rest inside the vaginal canal for 20-30 minutes. For more information go to: https://www.vuvatech.com
* Pain Down There is happy to report these findings as it provides another resource within the multi-disciplinary approach to treating genital, sexual, and pelvic pain. Not one single medical approach is likely to cure chronic pelvic pain. Please take into consideration the use of VuVa magnetic dilators along with and part of a team-based approach to pain management: physical therapy, pain science education, mindfulness training, and other allied health care professionals.
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)
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.