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 SclerosisThis 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 SyndromeMyofascia 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 EndometriosisEndometriosis 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 DysfunctionThe 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 TraumaEvents 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 VulvodyniaGeneralized 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.
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"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 SurgeriesInjuries 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 AbuseMemories 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 SportsMany 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 InfluencesStructurally 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 & WEAKNESSESAs 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 ACOGProject 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 INVOLVEDWe 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)
 Chronic pelvic pain advocate, educator, and artist Soula Mantalvanos, brings us a new creation that is an incredible gift to anyone suffering from chronic pain. A chronic pain patient herself, Soula created this remarkable tool for patients by a patient. {Pain}Train is a web-based platform that allows us patients to store everything related to our pain in one place. So instead of trying to explain to multiple health care providers for the umpteenth time about you, your pain, your treatments, and your history - give that health care provider access to your {Pain}Train profile and it's all there for them. Your online profile allows you to save all your information on medications, treatments, health care providers, and dates. It also allows you to upload documents, images, and reports. Beyond the medical only, it also allows for a more holistic picture of who you are by telling your professional and personal story pre-injury. And of course there is space to describe your injury, your symptoms, your diagnosis (if you have one), any other medical history or conditions, and you can store all your information on any health care coverage. There is also a mood tracker and plenty of space to include additional information for your unique situation. Access to all of this information is secure using HTTPS protocol and your email address with chosen password. The "access" feature allows you to share your profile with anyone you want to give permission to view it. Simply input each health care provider into your account and they will be assigned a unique code (or QR code) for 'read only' access to all of your profile. You can either email this information to them or print it for them. Example Profile So Organized! FREE 3 Month "Test Ride"Since {Pain}Train is offering a free "test ride" for 3 months, I tried it out for myself. I must admit, it was pretty daunting to sit down and fill in everything (and I'm not even close to being done!) But I told myself to take it in chunks. Do a little now and I can always come back to it later, everything is saved and I won't lose what I've started. And once it's done it'll be a tool I can use and reuse and update, making life so much easier. I'm planning on taking it with me to my Ob/Gyn appointment this month. And since I'm not sure if she'll be interested in having email access to my profile, I'm planning on printing it. Thankfully, the print function creates a printer-friendly, well laid-out, physical page copy version of the profile. See below: Printable VersioN Print Version Looks Nice Too! SubScription to {PAIN}TrainIf after 3 months you are finding the platform helpful, it's just $29AUD yearly to continue your subscription. That's currently about $20/year US, based on the current exchange rate. If you choose not to subscribe after your 3 free months, your profile will be deleted. {Pain}Train doesn't ask you for payment information when you first register an account. After 3 months {Pain}Train will prompt you to pay the annual subscription fee. Pay at that time to keep your subscription. Your profile is deleted if you decide not to subscribe. I encourage you to give it a try! All Aboard! Need some help creating your profile? Download simple profile instructions from {Pain}Train.
Entrance Pain: Vestibulitis (Vulvar Vestibulodynia) Vaginal penetration pain, or vaginal entrance pain. Pain in this region when "provoked" (trying to insert any object into the vagina) is most commonly due to a condition popularly known as vestibulitis. Vestibulitis is thought to be caused by highly sensitized nerve endings being contributed to by other pelvic pain triggers. This condition is frequently misdiagnosed as vaginal infections.
But let's back up. What do we call the vaginal opening anyway? If I had known more terms in my own research for answers, I may have gotten a bit farther a bit sooner. Vocab Lesson 1: What is the vaginal opening? The vaginal opening is known as the vestibule. The vestibule contains large amounts of pain receptors. Vocab Lesson 2: So then where is the vagina? The vagina is actually muscular tubing inside the female reproductive system that runs from the external genitalia to the cervix. Vocab Lesson 3: If that's the vagina then what do we call the external genitalia? The entirety of the female external genitalia (including the vestibule) is called the vulva. Vocab Lesson 4: So if I have pain at the vaginal opening... ahem.. I mean the vestibule... then what is that called? Pain in the vestibule is called Vulvar Vestibulodynia or Vulvar Vestibulitis (or you might hear it called just vestibulitis). Vocab Lesson 5: What if my pain occurs in other areas "down there" or seems to be spontaneous instead of provoked? Chronic pain anywhere in the region of the vulva (as far back as the rectal opening and as far forward as the clitoris) is known as vulvodynia. Vulvodynia has two categories. 1: Vulvar Vestibulodynia (see Lesson 4) and 2: Generalized Vulvodynia Generalized Vulvodynia is unprovoked pain. It is relatively constant and often described as burning or sore. It can occur in just one specific area or in multiple areas around the vulva. It is less common and more difficult to successfully treat. Pain emanating from the pudenal nerve may be a significant contributor to this condition in some cases (pudendal neuralgia). So that's the vocab lesson for now in vaginal penetration pain, or vaginal entrance pain. Want to understand more pelvic and genital pain related vocab? Go to the Glossary.  The long-awaited Video Guide Healing the Pain 'Down There': A Guide for Females with Persistent Genital & Sexual Pain is now available for purchase. Learn More: 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  If you suffer from Pudendal Neuralgia and/or other chronic pelvic pain conditions, we encourage you to keep an eye on the Pudendal Neuralgia Association's Events Page. Several upcoming events include:
- May 27, 2015 at 7:30PM Eastern: Videoconference Support Group lead by Spiritual Psychotherapist MaryBeth Scalice, M.A., Ed.D and Dahri McFaline, M.Ed. - June 9, 2015 at 7:00PM Eastern: Physical Therapy and Pudendal Neuralgia Webinar with Amy Stein. Amy Stein, DPT, BCB-PMD is the founder of and premier practitioner at Beyond Basics Physical Therapy in NYC. She will be presenting on how pelvic floor physical therapists evaluate and treat Pudendal Neuralgia. She will discuss when to try PT, when to get a second opinion, what to look for and what to do at home. She will also answer questions. To join the online meeting events, download Fuze.com and send your email address to pna@pudendalassociation.org. You will receive an email invitation to join the video conference 15 minutes before it begins. If you prefer to join by phone, that phone number is included in the invitation email. The virtual gatherings are free of charge. But you must preregister by contacting PNA via pna@pudendalassociation.org.
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.
Today we shine the spotlight on Atara Schimmel. Atara is dedicating countless hours of her time to raising awareness for Chronic Pelvic Pain Conditions. It is estimated that in the United States alone over 30 million women suffer from chronic pelvic pain (conditions like Interstitial Cystitis, Pudendal Neuralgia, Vulvodynia, Endometriosis, ... and others).
To shed light on this astounding statistic, Atara is creating 30 Angel-Ladies, one angel represents one million women. These Angel-Ladies (three of them seen above) will be showcased during an art exhibition at Newton Open Studios Art Fair April 11th and 12th. In addition to the 30 Angel-Ladies, Atara will also be exhibiting the faces of real women who are living with Chronic Pelvic Pain Conditions, to make the showcase even more intimate and powerful. Along with the faces will appear a sentence or two about that lady's strengths and qualities within themselves that they love. Atara has received a great number of responses from women willing to share their faces to raise awareness alongside Atara's Angel-Ladies. Of these women Atara said: "The more vocal we become, the more we will heal. The more that we put our stories out there, the more help we will receive. The responsibility to bring these conditions into awareness is ours. The change will come from us. Thank you for taking the step into the light with me. Your participation makes me fight harder." If you're interested in joining the movement just head to Atara's facebook page. 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. Regards, Amrita 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. - Leslie 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. |
AuthorStephanie 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. Archives
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