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Pain 'Down There'
  • Welcome
  • Blog
  • Store
  • Contact Us
  • Resources
    • Resource List
    • Recommended Products
    • Sexual Partners Support
  • Donate
    • The Foundation for The Prevention of Chronic Pelvic Pain
    • Compassionate CrowdFunding
  • Glossary
  • FAQs

Blog

A Guide to Clean Cleaning

2/20/2018

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How (& Why) to Easily & Quickly Make Your own Housecleaning Products

Grab a pen and paper real quick to take notes so you can refer to them later when you're making the cleaning products! 
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WHY DO I HAVE VAGINAL PAIN? A SCIENTIFIC LOOK AT THE VULVAR VESTIBULE 

11/30/2016

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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. 
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NUTRITIONAL THERAPY FOR PELVIC PAIN

7/20/2016

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NUTRITIONAL THERAPY FOR PELVIC PAIN GUEST POST BY CERTIFIED WOMEN'S HEALTH AND NUTRITION COACH, SUSAN TESSMAN
Women's Health and Nutrition Coach Susan Tessman on the connection between food and pelvic pain.
“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:
  • free range, grass fed meats, wild game, and wild-caught salmon
  • a wide variety and rainbow colors of veggies
  • gluten free grains - quinoa, millet, amaranth, tapioca, rice, sorghum
  • nuts and seeds - coconut, pine nuts, chia seeds, almonds, brazil nuts, walnuts, pecans, nut flours, and meals
  • legumes
  • whole fruits, especially berries
  • healthy fats from olive oil, coconut oil, avocados, ghee, and nut oils
  • fermented foods like water kefir, sauerkraut, kim chee, other fermented vegetables
  • herbs and spices
  • beverages - water, broths, un-caffeinated herbal teas, mineral water, diluted juices, vegetable juices, coconut and other non-dairy milks
  • sweeteners (to be used sparingly!) - brown rice syrup, raw honey, stevia, fruit sweetener, blackstrap molasses
IS THERE A PELVIC PAIN ELIMINATION DIET?
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:
  • for women with vulvodynia, avoiding foods that are high in oxalates may reduce symptoms.  Some higher oxalate containing foods include spinach, soybeans, grains, legumes, potatoes, almonds, cashews, rhubarb, raspberries, chocolate
  • for sufferers of interstitial cystitis/painful bladder syndrome avoiding foods like citrus juices, coffee, alcohol, and spicy foods that can cause bladder irritation may be very helpful
  • in treating endometriosis, we emphasize the balancing of excess estrogen which can fuel the growth of the disease, by removing inflammatory foods and products that tend to imbalance estrogen levels, and emphasizing detoxifying veggies, fruits, fiber and supplements as part of a comprehensive approach to pain reduction and hormone balancing
There is no “one size fits all” diet to treat pelvic pain, but by removing those foods known to promote inflammation and unhealthy digestive functions, identifying and removing foods that create negative symptoms that are particular to each individual, and rebuilding overall health with nutrient dense, anti-inflammatory foods, the body will be more fully supported to heal.

 
  1. Lark, Susan M., M.D., Fibroid Tumors and Endometriosis Self Help Book. 1995
  2. J Reprod Med. 2005 Oct;50(10):745-758
  3. Human Reprod. 2002;17(10):2715-2724
  4. Reed BD, Harlow SD, Sen A, Edwards RM, Chen D, Haefner HK. Relationship Between Vulvodynia and Chronic Comorbid Pain Conditions. Obstetrics and gynecology. 2012;120(1):145-151. doi:10.1097/AOG.0b013e31825957cf.
  5. Marziali M, Venza M, Lazzaro S, et al. “Gluten- Free Diet: a new strategy for management of painful endometriosis related symptoms?” Minerva Chirurgica. Dec; 67(6) (2012): 499-504
 
Resources
Cohan, Wendy, RN, The Better Bladder Book. 2011
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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
 
BIO
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
 
 

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3 Myths About Vaginismus

4/26/2016

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3 Myths About Vaginismus
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. 

Content Providers of this Article, paindownthere.com, and video guide series for Healing the Pain 'Down There': 
​
Robert Echenberg, MD
Karen Liberi, MS, MPT, WCS 
Alexandra Milspaw, PhD, LPC
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Lady Bits: A Review

3/18/2016

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Understand Your Body, Elevate Your Health, and Reclaim Your Spark ~ Naturally 
LADY BITS 
Book By: Dr. Brianne Grogan, DPT 
Founder of FemFusion Fitness 

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I'm so thankful to Dr. Brianne Grogan for this inspirational book for women. With a background in women's health physical therapy she is the perfect author to take us through the challenges (and delights!) of being female. I would recommend that any and every woman read this book. It's not specifically for women who are experiencing sexual and pelvic pain but it is for women who are experiencing being a woman! (Redundant, I know). But truly, I gained valuable insights and perspectives from Brianne's knowledge base that she's built up over years of both clinical practice and personal study and research. 

Certain pieces of these "lady bits" of information have really stuck with me after finishing the book.  I love that Brianne acknowledges that not everything in the book is going to connect with every woman all the time. But she encourages you to really own the pieces that do resonate with you. For instance, since reading the book I daily think about these suggestions from Brianne:

- Move everyday
This way of phrasing the importance of movement just lifts pounds of pressure off of me. While I certainly will not (and frankly cannot) "exercise" everyday I can sure move everyday. One day I can do some heavier household chores while appropriately engaging my pelvic floor and core musculature. The next day I can dance to a few of my favorite songs.  I can practice yoga, I can get up from the computer and take a walk. I can chase my kitten around the house. I can move everyday. 

- The 80/20  Rule
When it comes to my lifestyle: diet/nutrition, stress management, physical fitness, minimizing my exposure to toxins, etc. it is completely unrealistic to think I'm going to get it right 100% of the time. So, I'll be quite content to get it right 80% of the time. Even if I aim for 100% and land at 80% I'll accept that. Can't crockpot my bone broth for 24 hours (to get the most benefit) but I can crockpot it for 16 hours? That's ok. 80/20 Rule! Ate clean all week then indulged in too many potato chips on Saturday afternoon? It's ok. 80/20 Rule! 

- Stop Rushing to Pee
Of all the things that we do in a rush, peeing shouldn't be one of them. For goodness sake, I need to give my body some relaxed moments if at no other time, then during urination. Instead of pushing it out as fast as possible so I can get back to my day, I now try to mindfully pee. Gently relax my pelvic floor muscles and allow it some time, concluding with some pelvic rocks (tilt back and forth) to help fully empty the bladder.

Those are a few of the bits I've learned from Brianne that I use and think about everyday. The book is so rich with practical, inspirational, and simple tools to empower you with information that isn't overwhelming and will make you smile. I also love, of course, that she spends plenty of time on the importance of pelvic floor function and health. How this topic continues to get missed in women's health is still baffling to me. No such issue in this book, however. Brianne helps us understand our body and the inner core mechanics and postures that will help us age radiantly! Brianne also provides free online videos to walk you through what she calls the "Inner Core Energizer". 

Again, this book isn't specifically for women who are experiencing pain in the pelvic region and we wouldn't (nor would Brianne - as she does discuss) recommend that you take part in "Kegels" or inner core strengthening techniques until you are fully able to relax your pelvic floor. After years of holding my pelvic floor tight and clenched in, my pelvic muscles became hypertonic (too tense) and lost their proper function. Which lead to repercussions like persistently painful sexual intercourse. After rehabilitating the muscles through specialized pelvic floor physical therapy and the concepts in the video guide Healing the Pain 'Down There': A Guide for Females with Persistent Genital & Sexual Pain I can participate, though modified, in the Inner Core Energizer routine. And for my female friends and family members who are exhibiting symptoms of pelvic organ prolapse (when pelvic floor muscles become too loose and pelvic organs begin to drop because their support structure, the pelvic floor muscles, are weakened)  I love telling them all about 'Lady Bits' and Dr. Brianne Grogan. Thanks again to Brianne for this comprehensive resource for women! 


BUY LADY BITS NOW IN DIGITAL OR PRINT
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TURN UP THE LIGHTS: THE FUTURE OF CHRONIC PELVIC, SEXUAL, & GENITAL PAIN CARE

2/19/2016

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A Callout for OB-GYN Education Reform 
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WHO IS ACOG AND HOW DO THEY INFLUENCE THE PROTOCOL FOR PELVIC PAIN?

The American Congress of Obstetricians and Gynecologists (ACOG) is the companion organization to the American College of Obstetricians and Gynecologists. Both entities are non-profit professional membership organizations for physicians providing health care to women. With over 58,000 members both The College and ACOG are recognized as the nation’s leading authority on all things women’s health. Though based out of Washington D.C. ACOG is made of various districts and sections that operate throughout the US.
 
​The purpose of The College and ACOG is to advocate for quality health care for women, maintain the highest standards of clinical practice, maintain the highest standards of continuing education for their members, promote patient education, and increase public awareness and awareness among their members of the changing issues facing women’s health care. ACOG in particular is dedicated to the advancement of women’s health care as well as the interests of its members through medical education, research, practice, and advocacy. Operations of The College and ACOG are overseen by member elected Executive Committees, Executive Staff, and Board of Trustees. 
 
Because of the nationally and internationally recognized authority of these organizations, they play a significant role in the influence of academia and education for students in residency who are in training to become board certified Ob-Gyn physicians. The head of The College’s Education division oversees the Council on Resident Education in Obstetrics and Gynecology. Currently, Sandra A. Carson, MD holds this position.
 
 They also play a significant role in the influence of clinical guidelines for women’s health providers through professional materials that are made available to their members. The Vice President of Practice Activities oversees these clinical guidelines. Currently Dr. Chris Zahn is holding this executive staff position. Previously, Hal C. Lawrence III, MD held this Practice Activities position and in 2011 was appointed The College’s Executive Vice President, a position that puts him at the helm of The American College of Obstetricians and Gynecologists.
 

ACOG STRENGTHS & WEAKNESSES

As one can imagine, “all things women’s health” encompasses a vast array of subjects and challenges. From cervical cancer to health care reform. From pregnancy, labor and delivery to hysterectomies. From infertility to birth control to member medical liability. From mammograms to breast feeding to sexually transmitted infections. Clearly ACOG and The College (we’ll collectively call them ACOG now) is tasked with an enormous undertaking.
 
Focusing in on the category of “Gynecologic Problems” ACOG does have guidelines on chronic pelvic pain found in the Fourth Edition Resource Manual, copyright 2014. While the section is very short, coming in at under a page in length, there are several reasons to be hopeful that ACOG is beginning to steering things in the right direction. The guidelines say that chronic pelvic pain is common among women. And requires a multidisciplinary approach in its diagnosis and treatment. Bladder, colorectal, neurological, musculoskeletal, abuse, pelvic surgeries and traumas are all listed as potential sources of the pain. Though psychological causes are also listed, they directly instruct the reader not to ignore the significance of the pain despite normal or inconclusive physical exams, evaluations, or findings. Management of the pain is to involve addressing the underlying causes. Any cause found not to be gynecological in nature should be referred to an appropriate specialist. If the source of pain cannot be determined the manual refers readers to Part 4 on managing chronic pain, which is mostly information about opioids and anti-inflammatory medications. 
 
 In addition to the general guidelines on chronic pelvic pain, ACOG has also released a 2006 reaffirmed Committee Opinion on Vulvodynia, a 2013 reaffirmed Practice Bulletin on Female Sexual Dysfunction, and guidelines on vulvar skin disorders. These four resources in combination available to women’s health practitioners cover good ground in at least defining terms like vaginismus and vulvodynia as well some starting places for diagnosis and treatment. Somewhat disconcerting is my personal experience with these disorders in 2007 and 2008, after information would have been made available on them; yet I experienced looks of confusion from multiple practitioners who didn’t seem to be aware these terms even existed. 
 
 ACOG, according to a recent letter from Dr. Chris Zahn Vice President of Practice Activities, strives to create practice guidelines and recommendations that are “heavily based upon published medical literature, mostly from peer-reviewed journals”. Dr. Zahn goes on to say that while the research takes time, it is essential that their recommendations reflect high quality evidence and data. ACOG’s strict adherence to peer reviewed medical evidence and the vast subject areas within women’s health for which ACOG must advocate, promote, and educate could be counted among its strengths.  Though, as is often the case, they could also very well be counted as two of its greatest weaknesses. 

Chronic pelvic pain triggers go far beyond the scope of the currently available guidelines, opinions, and bulletins released by ACOG, even for the more common disorders that have been known to affect up to 20% of women in the U.S. alone. And, completely absent from all of these resources are two disorders in the pelvic region: Pudendal Neuralgia and Persistent Genital Arousal Disorder (or PGAD). While these conditions are thought to be rare by some practitioners, it is unknown the actual incidents in the general population. Research on the estimation of these conditions needs to catch up with actual occurrences, and account for the many individuals who present with these conditions but are misdiagnosed or ignored. Whatever the unknown figure may be, the effect on women (and men) is life altering, significantly reducing quality of life on a day by day basis, not just as it relates to sexual pain and discomfort.
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Pudendal Neuralgia is characterized by sharp pain surrounding the pudendal nerve due to dysfunction or compression of this nerve. The pudendal nerve stems from the sacrum (the triangle shaped bone at the base of the spine that your tail bone is attached to) but it runs throughout the entire pelvic region. Other symptoms can include numbness, tingling, burning, and incontinence (loss of bladder or bowel control). If you feel like you need a visual tour of the pudendal nerve “google” search ‘pudendal nerve tour’ and then click on videos. (Also view this informative video by Dr. Valovska)  You will gain immense respect for this nerve immediately and better understand how its injury or dysfunction could indeed cause exquisite pain and ongoing distress. Sufferers can experience PTSD due to mind-altering pain levels. Many lose the ability to work and function, being house-bound and bed-ridden. Suicide is, unfortunately, the only option many of these sufferers feel like they have, especially if no one can make sense of their pain.
 
Persistent Genital Arousal Disorder (PGAD) has also been thought of as Restless Genital Syndrome, as it seems to mimic other neurological disorders such as Restless Leg Syndrome. PGAD is characterized by ongoing, spontaneous, uncontrollable genital arousal that is not related to sexual desire. This persistent arousal of the genitalia is sometimes completely debilitating for those who suffer from the symptoms. Interfering with everyday tasks of life, sufferers often experience depression, anxiety and anxiety attacks, and feelings of distress and hopelessness leading to suicidal ideation and action. 
 

THE CAMPAIGN TO REACH ACOG 

​Project Angel, spearheaded by Pudendal Neuralgia sufferer & artist-advocate Atara Schimmel, has been tirelessly working to bring these disorders to the attention of ACOG, requesting that these and other Chronic Pelvic Pain disorders be not only recognized but also that clear guidelines, educational objectives, and curricula be put into place for the education of both currently practicing women’s health providers and the up-and-coming generation of providers who are in the classroom and residency programs. Many personal letters and testimonies from sufferers have already been received by ACOG. We want them to see that real women and men with real stories are being impacted. And we want them to know that many have already given up. Insufficient treatment options, lack of compassion and understanding on the part of providers, and the general disinterest on the part of the institution and the public leaves sufferers with very few choices. And some of them opt to take their own lives for the lack of a better option. 

Download the most recent response letter from Dr. Chris Zahn at ACOG to the Project Angel campaign. We are grateful that ACOG chooses to respond to us and that they relay their shared interest in addressing the urgent issue of debilitating pelvic pain. We respectfully disagree, however, that there is not enough scientific publications to make recommendations. At least under their “Level C” conclusions which are based on consensus and expert opinion, or under their “Level B” conclusions which are based on inconsistent scientific evidence. 
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For the research of this blog, I spent about two hours at my local university searching for only peer-reviewed medical journal articles on both Pudendal Neuralgia and PGAD (notice the letter from Dr. Zahn makes no mention of PGAD though we specifically asked for it to also be addressed). In that time I was able to find over 15 published articles, most of them in the last 5 years, available through that university alone on Pudendal Neuralgia. And over 20 on PGAD.
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HOW TO GET INVOLVED 

We will continue to put respectful and appropriate pressure on ACOG to hear our pleas and create change. We do it for the millions of women and men who have already experienced chronic pelvic pain conditions and yet are unable to find OB-GYN practitioners who are able to make sense of their pain. And for the women and men who will experience CPP at some point in the future, that they might have access to the so desperately needed care that we should have received but couldn’t find.
 
We are petitioning ACOG to address two very specific requests:


1. Incorporate vulvovaginal and pelvic pain conditions into core curricula of gynecology and obstetrics and continuing ed.
 

While ACOG may be on the right track given the resources they have released via their guidelines, resource manuals, and bulletins, we are not aware that they are incorporating this vital information into the core curricula of every gynecologist’s and obstetrician’s education. And while the current information is helpful, it is lacking considerably. It is crucial that practitioners and students in their residencies and fellowship programs receive training in the assessment and management of pudendal neuralgia, persistent genital arousal disorder, vulvodynia, interstitial cystitis, endometriosis, vestibulodynia, penile pain, ejaculatory pain, irritable bowel syndrome, pelvic floor dysfunction and a variety of peripheral neuropathies that occur commonly in the pelvic region. Lichen simplex, lichen sclerosis, and lichen planus are common skin disorders affecting the genitalia and also must be recognized. Many CPP patients experience multiple conditions that are interrelated.  A multidisciplinary approach to diagnosing and treating vulvovaginal, penile and pelvic pain is imperative. 
     

2. 
Create guidelines, educational objectives, and curricula for Pudendal Neuralgia (PN) and Persistent Genital Arousal Disorder (PGAD) 

While ACOG may currently recognize some CPP conditions in their guidelines such as vaginismus and vulvodynia, they don’t recognize PN or PGAD in their guidelines. We want to see these two disorders be specifically recognized by ACOG and guidelines and educational objectives be created for addressing them. Therefore also including them into the core curricula for students and practitioners as we are requesting in our first point above.
 
We fully realize that these requests require time, energy, effort, and resources from ACOG and that this, along with their many other responsibilities, is a massive undertaking. We support them, we will send them our findings, we can recommend doctors to them that are having successes. But simply put, all OB-GYN practitioners need to know the basics of all CPP disorders and the basics of the multi-disciplinary approaches that are used to treat them. Perhaps there needs to be a re-structuring to allow for specialists in CPP related conditions that are either under the ACOG authority or under the authority of a different entity. But there is no excuse for any OB-GYN to tell a patient that pain "must be in their head". It must become the standard norm that all OB-GYN practitioners recognize CPP and its interrelated triggers and at least be aware of the treatment modalities available so they can make appropriate referrals and recommendations.
  
Please join us in the campaign! More voices from many different directions will influence the changing of the tide, the paradigm shift that will ultimately turn something this massive in a whole new and better direction.
 
Here’s how to help:
 
  • Write a personalized, one page letter directly to ACOG. Download an example letter to help you:
Personal experience
Loved one with a personal experience
Public Advocate (no personal experience but want to contribute to the campaign)


  • Sign our digital campaign to incorporate CPP into core curricula
  • Sign our digital campaign to create guidelines and objectives for PN and PGAD
  • Send ACOG peer-reviewed journal citations. Head to your local university and ask if you can have a guest account to find peer-reviewed/scholarly articles in their Professional Journal database. Have them show you how to find only peer-reviewed articles on the topics of Pudendal Neuralgia and PGAD. Save the articles you find that are available and save the citation information for those that are not. Email your findings to SCarson@acog.org
  • Talk about it! Tell your doctors, your nurses, your hospital staff, your family, your friends, your roommates, your college professors what you’ve learned. Share about it on social media. Raise the public consciousness about chronic pelvic pain conditions so that they gain more institutional support, which will promote further research.
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Preventing Chronic Pelvic, Genital, & Sexual Pain

11/12/2015

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PAINFUL SEX PREVENTION ​

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Prevention is a noun. An action. Something we have to do. While the triggers or reasons for persistent painful sex and chronic pelvic pain disorders can be complex, interconnected, and varied let's start with what we do know. 

Tight and clenched stomach, buttocks, legs and chest-breathing, carried over into everyday tasks and daily living,  can be harmful to the pelvic floor. And a tight, tense, and too "turned-on" pelvic floor will eventually lose its proper function.

Many sporting activities require these tight body positions in order to perform them well.  Dance, running, gymnastics, track, soccer, martial arts, and others place heavy emphasis on core strength, tight body positions and breathing from the chest instead of the abdomen. 

Along with overly clenching techniques associated with training for many of these sports, there have been more injuries to young women over the past number of years with increasingly competitive young female athletes. Injuries to ankles, knees, hips, tailbones, and straddle type vulvar traumas all have contributed to chronic pelvic and sexual pain, as well.

The book entitled: “Warrior Girls: Protecting Our Daughters Against the Injury Epidemic in Women’s Sports” by Michael Sokolove points out the consequences of cumulative injuries in young women, not necessarily solely from the lack of appropriate training over the course of their pre and post pubertal years, but also by the exuberance and passion and competitiveness that so many girls exhibit during the course of their athletic years. He points out that so much has been learned in the fields of sports medicine and training that could be preventative for injury, but that commonly, many factors prevent the implementation of good practices by the coaches, trainers, and even the parents of these young women. 


These cautions are certainly not meant to endorse quitting sports all together. Instead, we are asking you to be aware that you need to let clenched body positions go when you walk out of practice or performance. If you are a family member or friend of a young female athlete who may have the early symptoms of pelvic pain, try to talk to them about the consequences of holding clenched body positions even though this is quite counter-cultural right now, because it seems everyone is out there trying to actually “strengthen their core”.

If you are injured or feel pain, don’t allow yourself or a family member or friend to “push through the pain” to keep performing. If you would like to learn about our prevention and education initiatives or would like to donate to the program please visit The Foundation for the Prevention of Chronic Pelvic Pain at thefpcpp.org (Now teamed up with Bridge for Pelvic Pain). 

Watch the CHapter on Prevention: 

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Ongoing Treatment

11/3/2015

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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.
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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. 

VIEW MORE CHAPTER PREVIEWS
PURCHASE NOW
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DVD Guide for Healing the Pain 'Down There' Available Now

8/12/2015

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BUY NOW
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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 

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IC Awareness Month Seeks Volunteers

6/30/2015

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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? 


What's needed:
(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: volunteers@icawareness.org

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    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. 

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