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.
NUTRITIONAL THERAPY FOR PELVIC PAIN GUEST POST BY CERTIFIED WOMEN'S HEALTH AND NUTRITION COACH, SUSAN TESSMAN
“After years of working with thousands of women patients, I have found that no therapy can be fully effective without including beneficial dietary changes as part of the treatment plan." (1) Over 20 years ago those words in a book on endometriosis were my first introduction to the connection between food and pelvic pain. I had been diagnosed with uterine fibroids, ovarian cysts and advanced endometriosis earlier that year and was determined to try anything I could that might help to reduce the pain, and avoid having to undergo further surgery or deal with the emotional and physical side effects of hormonal treatments.
At that time there was much less access to information on complementary therapies for pelvic pain, but I learned as much as I could about a holistic approach for treating endometriosis and other pelvic pain issues that I developed. I followed specific dietary recommendations along with addressing other lifestyle factors like exercise, sleep, and mind-body practices and had regular treatment with pelvic floor physical therapy, acupuncture and massage therapy. It took trial and error to learn what worked best for my body, but I had great results in managing my health outcome.
Most of the time there’s not a magic bullet cure for pelvic pain - it takes an integrated and multi-disciplinary approach to support sustained healing. Whether you suffer with painful bladder syndrome, pelvic floor dysfunction, endometriosis, irritable bowel syndrome (IBS), vulvodynia, or other sources of chronic pelvic pain, nutrition can be used as an additional therapeutic tool to improve these conditions, and to heal co-existing health issues that can increase pelvic pain.
NUTRITION AND ROOT CAUSES OF PELVIC PAIN
When working with nutritional therapy for pelvic pain we want to consider what some of the root causes and triggers might be. It’s estimated that the breakdown of sources of chronic pelvic pain are approximately 37% gastro-intestinal, 31% from urologic causes, 20% reproductive system, and 12% musculoskeletal.
Studies have shown that chronic pelvic pain is frequently associated with systemic inflammation, including autoimmune diseases. (2)
A 2002 study reported in the Sept. 27th issue of Human Reproduction (3) concluded that hypothyroidism, fibromyalgia, chronic fatigue syndrome, autoimmune diseases, allergies and asthma are all significantly more common in women with endometriosis than in women in the general USA population.
Vulvodynia is associated with other chronic comorbid pain conditions such as fibromyalgia, interstitial cystitis and irritable bowel syndrome, individually and in combination, and the presence of vulvodynia or any of the other comorbid pain conditions increases the likelihood that a woman will have one or more of the other chronic pain conditions. (4)
If you suffer with multiple health issues, nutritional therapy can not only address the pain symptoms, but can also support healing in other inter-related body systems that can be impacting your pelvic pain. The right nutritional shifts can correct digestive disorders, improve the healthy balance of gut microbiota and ability to absorb healing nutrients, bring hormones and blood sugar levels into better balance – all of which can impact pain levels, support your recovery from surgery and medical procedures, and help to down-regulate the nervous system so pain response is not as intense.
ELIMINATION DIETS TO DECREASE INFLAMMATION AND PAIN
To begin to address pelvic pain symptoms, a personalized elimination diet is an important tool. What exactly is an elimination diet and why do we use it?
Most people are familiar with food allergies and how potentially deadly they can be. A food allergy reaction occurs when your body recognizes a certain food as harmful and produces an immune response to that food, which can result in severe symptoms. Antibodies produced in the allergic response (most commonly IgE antibodies) will show up on a food allergy test. 8 food groups have been identified as causing 90% of all IgE food allergies in the U.S.: Milk, eggs, fish, shellfish, wheat, soy, peanuts, and tree nuts.
But many of these same foods also cause reactions that may not produce IgE antibodies, but do cause other immune responses, and these reactions are referred to as food sensitivities or intolerances. A common example of this would be having “lactose intolerance” where you’re lacking the enzyme needed to properly digest this milk sugar. These kind of responses are often delayed and not always as obvious to detect. Symptoms of food intolerances can include digestive problems like bloating, cramping, constipation, diarrhea; headaches; sinus problems; unexplained weight gain; fatigue; skin conditions; and increased pain anywhere in your body.
You can imagine if you’re eating poorly tolerated foods over and over again, and each time your body is having a reaction, that this can lead over time to a chronic state of low-grade inflammation, as the immune system is always being activated. And once inflammation is ongoing, it can also lead to developing even more food intolerances, so a very negative cycle of inflammation is set up, and symptoms increase.
Testing for allergies and food intolerances can be extremely helpful, but tests are not always completely accurate, and can be expensive, so using an elimination diet can be another effective method to help identify these possible food sensitivities. One of the main goals of using an elimination diet with pelvic pain conditions is to calm down and reduce the inflammation cycle and resulting pain and symptoms, and allow the body to rest and heal.
ELIMINATION DIET BASICS
The nutritional advice I followed over 20 years ago for my pain was to stop eating dairy, wheat and sugar (and processed foods in general) and focus on whole foods. I’ll admit it wasn’t a total breeze at first! Those three food groups are still considered top of the list to avoid to reduce many disease or pain states, including pelvic pain conditions. But in a full elimination diet protocol we include all of the main “allergenic” foods: dairy, gluten, corn, shellfish, soy, eggs, peanuts, tree nuts as well as alcohol and caffeine. Some people may also need to remove nightshades, citrus fruits and sometimes even non-gluten grains and/or legumes.
These foods are removed for 3 to 4 weeks, and at the end of that time you add back only one of the eliminated food groups at a time, eating 2-3 servings per day for 3 to 4 days, making note of any symptoms that arise and then breaking from that food to let the symptoms resolve. The following week you try reintroducing the next food. For those foods you identify as having a reaction to, it’s a good idea to then stay off of them for at least 3 to 6 months, if not longer, to allow for full healing before trying to introduce them again. Many people choose to permanently remove certain foods because they experience such improvements in their health.
When people first think about removing these foods from their diet, especially dairy, gluten and sugar, it can be overwhelming to say the least, because these foods have become such a huge part of the standard North American diet. It helped me stay motivated when I understood a little more of the “why” -
Dairy: Lactose is a sugar in cow’s milk, and casein is the protein found in cow’s milk. People can be sensitive to either or both. Many people who are gluten intolerant are also casein or lactose intolerant. Gluten can damage the part of the intestine that is responsible for producing the enzyme lactase, which is necessary for breaking down lactose. About 75% of adults worldwide are lactose intolerant, and don’t have the digestive enzymes needed to digest this milk sugar, and that means digestive distress. Dairy products are also a dietary source of arachidonic acid, the fat used by the body to produce “bad” prostaglandins, localized hormones which can increase pelvic pain, cramps, and inflammation.
Gluten: Gluten includes several related proteins found in wheat and other grains including spelt, kamut, triticale, barley and rye. It’s estimated that approximately 30 to 40% of the U.S. population has some sensitivity to gluten, in addition to those diagnosed with full blown autoimmune celiac disease. Non celiac gluten sensitivity can over time result in damage to the intestinal lining or mucosa, that then allows undigested food proteins to “leak” through the gut wall into the bloodstream, which can trigger pain, inflammation and autoimmune responses. Even among people who are not sensitive to gluten, eating it triggers the release of a protein produced in the small intestine called zonulin, which again can lead to damaged intestinal lining. Gluten expert Dr. Alessio Fasano has stated that nobody digests these proteins well, and because of this it tends to trigger an inflammatory response.
Gluten intolerance has also been linked to altered estrogen levels. In a 2012 study on women with severe painful endometriosis-related symptoms over 12 months, 75% of the over 200 participants reported statistically significant improvements in painful symptoms when eating gluten-free. (5)
Sugar: Sugar depletes the body’s B complex vitamins and minerals which can worsen muscle tension as well as nervous tension and anxiety. Lack of B vitamins can make it harder for the liver to handle estrogen (important with a number of pelvic pain conditions), and B6 in particular is required for production of good prostaglandins that have relaxant and anti-inflammatory effects. Too many simple carbohydrates and sugar can contribute to indigestion, leaky gut (damage to the lining of the gut), a suppressed immune system, and candida overgrowth. These all mean more inflammation, which can trigger increased pain or symptoms.
FOCUS ON ANTI-INFLAMMATORY FOODS
The good news is there are still lots of delicious, satisfying and nourishing foods left to eat – really! With the right guidance, you will find an elimination diet isn’t the imagined journey of utter deprivation, but leads to discovering and enjoying new foods, losing old cravings, and learning to easily make healthy substitutions. Foods that are well tolerated can be eaten again after only a few weeks.
A focus on choosing mostly whole, nutrient dense, organic foods when possible reduces exposure to toxic chemicals, pesticides and added hormones, so the best choices are:
A basic elimination diet is a great start to tackling your pelvic pain. There are growing resources available via books, group programs, and personal nutrition coaching to lead you through the process, but it’s always best to work with someone who understands pelvic pain conditions and can develop your personalized nutrition plan based on your particular genetic makeup, pelvic pain symptoms, and other health conditions and treatments you’re undergoing, especially in working to identify any personal food sensitivities and recommendations that are outside of a basic elimination diet.
A few examples of how we would tailor a pelvic pain nutritional program would be to also test removing additional foods that are known to increase symptoms for specific conditions:
Cohan, Wendy, RN, The Better Bladder Book. 2011
Morrison, JA, Sullivan, J. A novel approach to treating endometriosis. Alternative & Complimentary Therapies, August 1999, p 225-229.
Petrelluzzi KF, Garcia MC, Petta CA, et al. “Salivary cortisol concentrations, stress and quality of life in women with endometriosis and chronic pelvic pain.” Sep;11(5) (2008): 390-7. doi: 10.1080/10253890701840610.
Segersten, Alissa and Malterre, Tom, MS, CN, The Elimination Diet. 2015
Susan Tessman is a Certified Nutrition Coach, and Certified by the Integrative Women’s Health Institute as a Women’s Health and Nutrition Coach, with specialized training in chronic pelvic pain, hormone health and pre-conception health. She is dedicated to supporting women suffering with pelvic pain conditions, using a whole person approach that includes nutrition and lifestyle solutions. For more resources on endometriosis and pelvic pain please visit www.susantessman.com
"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.
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)
Chapter 31: Ongoing Treatment
Watch Chapter 31 of the Video Resource Series Healing the Pain 'Down There': A Guide for Females with Persistent Genital & Sexual Pain. Managing your ongoing treatment to maintain healthy pelvic function.
Now that you have the tools to treat the problem, decide what you need to continue in order to maintain healthy function and to manage your pelvic, genital, and sexual pain disorder. Many women experience painful sex for such a long period of time, they have no idea where the pain is coming from at first. But as you are able to map out your pain and understand where it is coming from (and why), you will begin to notice improvement. And you will begin to be confident that you have control over your pain. Should your pain return, you will begin to know why, and your confidence will build. Your learning curve about your own body will gradually increase and you will know how you can work to relieve it each time. With the techniques you have learned you can maintain proper function of the pelvic floor muscles and experience sexual intercourse with much less apprehension and discomfort.
Prior to this educational experience you may not have even heard of such conditions as Painful Bladder Syndrome or Interstitial Cystitis, Generalized Vulvodynia, Vulvar Vestibulodynia, Pudendal Neuralgia, and Pelvic Floor Dysfunction. These conditions and others just as common, such as Endometriosis and Irritable Bowel Syndrome all can be causes of and triggers for a variety of pelvic and sexual pain disorders. The more you know and the more you advocate for yourself and others with these conditions, the sooner the health care system will trend towards recognizing how common they are and how important it is to diagnose and treat them as early as possible. The quality of life of so many young people will depend on these issues being included in the routine evaluation of their health care into the future.
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
September is IC awareness month. Each year, IC Awareness Month is developed by you, the IC patient. Why? Because IC patients have a LOT to give. You have fresh, creative ideas that are relevant to IC patients. You understand implicitly why its so important to educate not only physicians but employers and community members about IC and pelvic pain. You know what it’s like to fight back when your rights have been threatened. You've also shared the struggle of trying to pay for expensive treatments. You have the passion, the drive and the motivation to make change in the world. By educating others, we can and will make a difference.
It’s time to put the committee together for 2015. Will you help?
(1) Contest organizer & judges to manage our IC Awareness Month poster and art campaigns
(2) Media/Press specialists to develop our media campaign and press materials
(3) Writers to develop stories related to IC
(4) Techies to develop/implement relevant fun activities and/or apps on our website or social networking platforms
(5) Social Networking Guru’s to develop our internet campaign.
(6) Interested, passionate patients who want to help
When:The committee generally works from July through September. Some may only contribute a few hours while others may choose to be more involved on a weekly basis. It is entirely your choice. The gift of your time is greatly appreciated!
Sign Up!If you’d like to get involved and serve on our committee, please send an email with your name, interest (i.e. role you’d like to fill), phone number and best email address at: email@example.com
Take a look at the image in the blog post just below. This image of the female pelvis is incomplete because there is a great deal more to the anatomy of the female pelvis that is just not shown in this image. The pictures in this blog post show much more of the complete anatomy of the pelvic region.
The actual causes of chronic, persistent pain itself are in all of these neuro-myofascial components: Nerves, Muscles, and Ligaments. Bladder, bowel, and reproductive organs are commonly acting as "triggers" that set off painful, but protective responses in the region. Just as in any other area of the body, the muscles, nerves, and ligaments go into a protective bracing mode as a result of current tissue injury, protecting against further injury, and even when the system is reminded of past injury. These structures are trying to immobilize the region in order to control the pain.
Comprehensive assessment and treatment of chronic pelvic pain therefore will naturally include specialized pelvic floor physical therapy to rehab and release long term muscle spasming and trigger points, as well as a working knowledge of diagnosing and managing chronic nerve type pain in the pelvic and genital region.
Q: I now have “pain down there” for no apparent reason. The first time I had sex it was slightly painful but the pain faded away and felt good. On a few other occasions following that time, the same thing would occur: a little bit of pain but then fading away. But lately if we switch positions or he falls out he cannot insert again. If he does it’s excruciating pain for me. He can’t put it in again, it feels “too tight”. I experience burning pain during sex and afterwards it hurts to urinate (only right after we have sex though). I’d go to a doctor but I have no insurance so I’m unable to afford it. What’s going on?
A: First of all, let us assure you that you are not alone in experiencing these symptoms. There are countless individuals going through very similar situations right now, many of whom also are not getting helpful answers from the medical community. We often see "UTIs" and "yeast infections" overly diagnosed in cases like yours. Of course you need to rule these out. But this can easily be done by going to a nurse practitioner at a Planned Parenthood clinic (fees are usually reasonable even without insurance). If the tests are negative or the treatments don’t help you, don’t continue to accept antibiotics or creams that aren’t proving to be affective in treating your pain. Please also consider:
1. Be sure to always use a good vaginal lubricant, such as Astroglide Gel (not the liquid), another product actually named "Slippery Stuff" which you can find on-line, or even simple coconut oil. These products are generally tolerated by most women even if they have minor inflammation at the vaginal opening (Vestibule). Make sure to put these lubricants on yourself and your partner to eliminate any friction which can help to minimize the pain
2. You could also be experiencing muscular restriction at the vaginal opening (Pelvic Floor Dysfunction - a clenching response to increased sensitivity to touch or friction at the Vestibule). With initial penetration - these muscles (pubovaginalis) are stretched, which may be creating your initial burning pain which then subsides as sex continues. Any time re-entry needs to happen (switching positions or him falling out), your brain perceives this as a "dangerous" situation and your pubovaginalis "clenches" to protect the area of pain. There are certainly exercises that can be done to help to 1) stretch the vaginal opening and 2) retrain the brain that your vaginal opening is not a "danger zone" so that the red flags gradually fade and your gripping reflex is no longer present allowing your partner to enter with low to no pain.
3. Since you say you have "excruciating pain" with penetration, the simple suggestions above may not be helpful enough. If you have already tried these simpler solutions and they are not helpful and you continue with pain, you may have the early signs of vulvar vestibulitis as well as interstitial cystitis / painful bladder syndrome (IC) contributing to penetration pain. Early signs of both of these conditions are quite common in young women. (Usually deeper penetration pain is associated with IC as the tip of the penis "hits" the irritated bladder. Initial penetration pain can be associated with vulvar vestibulitis as the sensitive tissue of the irritated vestibule are stretched) Consider drinking more water and de-acidifying the body by lowering acids in the diet to lower the inflammation that can occur in the bladder, urethra and vestibule. To download our Vaginal Health Guide click here.
4. Our DVD Healing the Pain 'Down There’ can help educate you on why this all might be happening and will give you strategies to help make it better yourself and also to help find professionals who may know more about these issues.
Interstitial Cystitis: Also known as Painful Bladder Syndrome or IC. It is a very common disorder of the bladder, it is estimated that about one out of every six reproductive aged women have some degree of IC. This condition is caused by a loss of the “protective lining” of the inside of the bladder, allowing for an inflammatory reaction of the bladder wall. Since urine is ordinarily very acidic and with the protective lining already diminished, the acidic nature of the urine also causes an inflammatory response which in turn triggers off symptoms of urinary frequency, urgency, and pain, pressure or discomfort anywhere in the pelvic region.
Unfortunately, many pelvic practitioners do not mention or think about this disorder when diagnosing pelvic, sexual, or genital discomfort. However, cumulative research has shown that persistent pain in the pelvic region is triggered by the bladder and/or bowl function at least 80% of the time and by gynecological disorders alone only 20% of the time.
If you are being diagnosed with frequent urinary tract infections or "UTIs", always ask your practitioner for a urine culture before taking any antibiotics. Instant "dip sticks" of your urine can look the same with IC as in a UTI.
For more information we recommend:
Interstitial Cystitis Association
Dr. Robert Echenberg, chronic pelvic & sexual pain conditions specialist and medical content provider for Pain 'Down There', encouraged some patients to share their story. To ShoutItOut so others know there is hope and healing out there. Here is Amrita's story:
I owe my life to Dr. Robert Echenberg for bringing back life to me once again after a suffering of almost 20 years. I traveled all the way from India to National Institute of Health, Maryland, Washington D. C to get evaluated for the continuous pelvic pain that could not get cured after seeing several physicians in my country. I was diagnosed with endometriosis in India. But the treatment could not give me relief from pain. I will be always indebted to Dr. Pamela Stratton from NIH who referred me to Dr. Echenberg. An extremely loving person along with a superb medical eye, he treated me for 2 months. He did bladder instillation, nerve treatments, medicine and physiotherapies. It's been more than 2 years now I feel wonderful in terms of my pelvic pain that originated from interstitial cystitis, vulvodynia, neuralgia, pelvic floor myofacial dysfunction and so on apart from endometriosis.
I wish more and more people around the world could get this kind of specialized treatment and get rid of the tremendous pain that they will never be able to speak out. Being an international patient I never found Dr. E (what we loving call him) less attentive to my emails. We could overcome geographical distance and I got the best possible treatment that too is quite an affordable expense (particularly because the amount of resources I had to waste in last 20 years). I would be happy if even a single person benefits from reading this review and reach people like Dr. E at the earliest in their respective lives.
University of Calcutta, India
Dr. Robert Echenberg, chronic pelvic & sexual pain conditions specialist and medical content provider for Pain 'Down There', encouraged some patients to share their story. To ShoutItOut so others know there is hope and healing out there. Here is Leslie's story:
Finding Dr. Echenberg and seeing him was the best thing I could have ever been blessed with. The pain that I have suffered with (silently) for so long and then the embarrassment of some of the other issues, all stemming from the pudendal nerves, have been so unbearable and I didn't know what to do for such a long time. Finally, I acquired enough courage to seek treatment from doctors, as it increasingly grew worse. I went to see my local doctors in El Paso, TX, but no one knew how to treat or diagnose my conditions involving pelvic pain: pudendal neuralgia, Persistent Genital Arousal Disorder, Interstitial Cystitis, Etc.). I live in the southwest and have seen numerous doctors, who were all at a loss as to how to properly treat me. Finally, I found Dr. Echenberg, in the far northeast, via an in-depth online research.
Dr. Echenberg has a wealth of knowledge in pelvic pain, in which I have not seen in any other doctor, yet he is very humble and willing to educate any and every doctor, patient, therapist, etc. around that is willing to listen. This area of medicine has been greatly neglected by the medical society so patients are struggling to find the right doctors to go to for treatment. In my personal experience, the physical medicine doctors pass it on to pain specialists, pain specialists pass it on to neurologists, neurologists pass it on to OB/GYN doctors, OB/GYN doctors pass it onto urologists, urologists pass it on to the OB/GYN doctors and the cycle is vicious. There are very few that know or have studied much regarding the pudendal nerves.
When my husband and I went to see Dr. Echenberg, he actually scheduled three hours, for our first appointment, to spend solely with us and went through everything in detail. He explained in depth all that I was experiencing and could find exactly where the pain was with trigger point treatment. His knowledge and educational session with us was so amazing for my husband and myself, knowing that what both of us were dealing with is "normal," considering the situation. Dr. Echenberg validated the spouse's side of what they are going through as well, which was great. It took a huge weight off both of our shoulders, knowing that there is hope, there are treatments and we are not alone. All the pain, embarrassment, agony, etc. that I had been facing could now be re-arranged and worked on. There is HOPE!!! Praise God!
Dr. Echenberg and his assistant, Kristin, have maintained close contact with me, even though I am unable to see him physically as often as I should. The constant validation, support and education that Dr. Echenberg and Kristin provide, through all that I face with the pain/etc., is what truly encourages me so much and keeps me pressing forward. They are definitely a blessing from God. I pray that more doctors start educating themselves on these pelvic pain conditions, as more patients start stepping forward and sharing their "hidden" pain.
El Paso, TX
Live near El Paso, TX and want to contact Leslie? Contact Us.
Have a Real Life Story to tell? Help us ShoutItOut and Contact Us.
Paindownthere.com and the educational/instructional videos Healing the Pain ‘Down There’ intend to explain, as best as possible, that there are many reasons in the pelvis for pelvic floor dysfunction and for genital and pelvic pain. One of these reasons may be hypertonicity (as posted about last time). Virtually everyone with pain, caused by all sorts of injuries to the body, has reactive hypertonicity in and around that injured area. The muscles around a knee injury or shoulder injury, for instance, always tighten to guard that area and stabilize or “splint” that area. Same in the pelvis. The way that pain is processed in the brain along with fear and anxiety factors can also continue to cause hypertonicity even after the initial injury has healed. Mind/body aspects of care become so important in this instance.
Other reasons or “triggers" in the pelvis for pelvic floor dysfunction and for genital and pelvic pain besides the implications of hypertonicity include:
Somatic reasons: Current or previous injuries or stress on all of the surrounding structural entities. These structural entities include bone, muscle, fascia (connective tissue), ligaments, and nerves.
Visceral reasons: Organ dysfunction like IC (Interstitial Cystitis or Painful Bladder Syndrome), IBS (Irritable Bowel Syndrome), Endometriosis, Prostatitis and others.
We want to help “connect these dots” for all the potential and interconnected sources or “triggers” of chronic pain in the pelvic and genital area.
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.