Resources
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The Interstitial Cystitis Association (ICA) advocates for interstitial cystitis (IC) research dedicated to the discovery of a cure and better treatments, raises awareness, and serves as a central hub for healthcare providers, researchers and millions of patients who suffer with constant urinary urgency and frequency and extreme bladder pain called IC. The ICA was established in 1984 to put a face on all those affected by IC and remains today as the only non-profit health association solely dedicated to improving the quality of healthcare and lives of people living with IC. To fulfill its mission, the ICA pursues three core functions: advocacy, research, and education. https://www.ichelp.org
The International Urogynecological Association (IUGA) is a professional medical association dedicated to the global advancement of urogynecological knowledge and patient care through education and the promotion of basic and clinical research on disorders of the female pelvic floor. In addition to holding an annual conference for professionals in the field of pelvic floor health and publishing the International Urogynecology Journal, IUGA activities include conducting education programs around the world, developing consensus terminology in the field, connecting related professionals, and producing patient education materials. https://www.yourpelvicfloor.org/about-us/
IC Relief is the source for the patented EZ Magic, EZ Magic XL and EZ Fit ergonomically designed, medical grade glass pelvic wands ideal for pelvic pain dysfunction trigger point massage and physical therapy, plus heating and cooling. learn more
The Urology Care Foundation is the world’s leading nonprofit urological health foundation – and the official foundation of the American Urological Association. They partner with physicians, researchers, healthcare professionals, patients, caregivers, families and the public to support and improve the prevention, detection and treatment of urological diseases through research and education. https://www.urologyhealth.org/
Founded in 1902, the AUA is a premier urologic association, providing invaluable support to the urologic community. Their mission is to promote the highest standards of urological clinical care through education, research and the formulation of health care policy. https://www.urologyhealth.org/about-us/what-we-do
The National Association for Continence is a national, private, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence. https://www.nafc.org/about-us
The American Urogynecologic Society (AUGS) is the premier non-profit organization representing professionals dedicated to treating female pelvic floor disorders. Founded in 1979, AUGS represents more than 1,900 members, including practicing physicians, nurse practitioners, physical therapists, nurses and health care professionals, and researchers from many disciplines. https://www.augs.org/about/
Bladder Health UK gives support to people with all forms of cystitis, overactive bladder and continence issues together with their families and friends. They are the largest bladder patient support charity in the UK with a busy chat room/forum, a widely used website and active Twitter and Facebook accounts for those bladder illness sufferers seeking information, help and support. http://bladderhealthuk.org/
Recurrent UTIs affect millions of females and may be caused by an underlying bladder infection that goes undiagnosed and ineffectively treated. The right information can lead to better testing to identify the cause of the infection and ultimately to finding a permanent solution. That’s where Live UTI Free comes in. Learn more and join the conversation. https://liveutifree.com/
The mission of the American Society of Radiologic Technologists is to advance and elevate the medical imaging and radiation therapy profession and to enhance the quality and safety of patient care. The American Society of Radiologic Technologists will be the premier professional association for the medical imaging and radiation therapy
community through education, advocacy, research and innovation. https://www.asrt.org/asrthome
The National Psoriasis Foundation (NPF) is a non-profit organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected. Founded in 1966, NPF is the leading patient advocacy group for the more than 8 million Americans living with psoriasis and psoriatic arthritis. Identified as a Complementary Therapy for psoriasis, the gel from the aloe plant can be applied to the skin up to three times a day. Research shows aloe vera gel containing at least .05% aloe can help reduce redness and scaling associated with psoriasis. https://www.psoriasis.org
The International Society for the Study of Women’s Sexual Health is a multidisciplinary, academic, and scientific organization that provides opportunities for communication among scholars, researchers, and practitioners about women’s sexual function and sexual experience, supports the highest standards of ethics and professionalism in research, education, and clinical practice of women’s sexuality, and provides the public with accurate information about women’s sexuality and sexual health. Find a Provider
For more than 20 years, the National Vulvodynia Association (NVA), a nonprofit organization, has been dedicated to improving the health and quality of life for women with chronic vulvar pain. https://www.nva.org/
The International Society for the Study of Vulvovaginal Disease promotes international communication among gynecologists, pathologists, dermatologists, and related disciplines, and establishes international agreement on terminology and definitions of vulvovaginal diseases. https://www.issvd.org/
APTA is an individual membership professional organization representing more than 100,000 member physical therapists, physical therapist assistants, and students. Find a PT here
The International Pelvic Pain Society was established in 1996. IPPS educates health care professionals how to diagnose and manage chronic pelvic pain, thereby changing the lives of patients worldwide and brings hope to men and women who suffer from chronic pelvic pain by significantly raising public awareness and impacting individual lives. https://www.pelvicpain.org/
Pelvic Rehab.com is a directory for patients searching for pelvic rehabilitation practitioners. Herman & Wallace / Pelvic Rehabilitation Institute, created the site so that patients can easily search the thousands of clinicians that they train each year to find the provider that best meets their needs. https://pelvicrehab.com/about/
Elizabeth Noble founded the Section on Women’s Health (SoWH) of the American Physical Therapy Association (APTA) in 1977. Today, the scope of practice for more than 3,000 SoWH members has widened to include myriad health abdominal and pelvic concerns of women, men and children including the latest evidence-based physical therapy services to everyone from childbearing women to peri-menopausal mothers, young athletes to men with incontinence or other pelvic health complications. SoWH provides Clinical Practice Guidelines to their members and patients and offer resources like a PT Locator Directory. https://www.womenshealthapta.org/
Julie Beyer, MA, RDN is an author, speaker and patient advocate. She has spent the last 20 years publishing books, writing for national publications, and speaking around the country to patients and nutrition professionals. Julie is considered a nutrition expert in the United States specifically focused on helping interstitial cystitis patients using diet to control the symptoms of this painful bladder condition. http://ic-diet.com/
When It Hurts Down There: 15 Proven Techniques to Alleviate Pelvic Pain, is a comprehensive approach to diagnosing and treating pelvic pain, including extensive education about pelvic and sexual pain issues, nutrition, and self-care. The best pearls of her education are included in this book! Dr. Stoehr is an Ob/Gyn who sees predominantly pelvic and sexual pain patients. The information stems
from over 80 scientific journal articles, ranging from gynecology to sports medicine and supplements. www.whenithurts.com
When It Hurts Down There: Cookbook includes ingredients that follow all the recommended diet changes and helps those with irritable bowel syndrome (IBS), Interstitial Cystitis/Bladder Pain Syndrome, Vulvodynia, and many of the other pelvic and sexual pain issues. Dietary changes have been shown in scientific literature to help reduce pain, but oftentimes the recommendations get a little overwhelming. Start your IC journey today with the tools you need to be successful. www.wihdtcookbook.com
Amy Stein, DPT, is a leading expert and at the forefront of treating pelvic floor dysfunction, pelvic pain, women’s health, and functional manual therapy for men, women, and children. Amy’s book, Heal Pelvic Pain, offers relief and recovery, not through surgery and not through drugs, but through strengthening, stretching and relaxation exercises, manual techniques, biofeedback, deep massage, heat and cold, and the other modalities of physical therapy. Buy on Amazon
The Interstitial Cystitis Solution has all the information you need, all in one place. It provides scientific reviews and evaluations of potential treatments, along with a helpful treatment plan tailored to your specific symptoms and lifestyle. The information is presented in an accessible way, with real-life examples from the author, Nicole Cozean has treated hundreds of patients who have found relief from their symptoms with the holistic treatment plan outlined in this book. This comprehensive guide allows you to take control of your healing and will restore sanity to the insane world of conflicting diagnoses, treatments, and advice. Buy here
Sex Without Pain: A Self-Treatment Guide To The Sex Life You Deserve was written by Heather Jeffcoat, DPT, a physical therapist with countless successes in treating pain of this type. Women with vaginismus, overactive pelvic floor, painful intercourse, vulvodynia, vulvar vestibulitis, vestibulodynia, dyspareunia, interstitial cystitis have all benefited from her unique program. Heather uses her orthopedic background to approach treatment of these muscles like they are….muscles! She utilizes a self-treatment tool called a dilator to provide massage and other muscle relaxation and stretching techniques in a gentle fashion to return a women’s muscles back to a resting, rather than guarded, state. Buy on Amazon
As a registered nurse, Wendy Cohan has provided health information and treatments for patients with a number of bladder conditions. She begins with a description of the anatomy and function of the urological system and the assessment, diagnosis, and treatment of typical bladder problems. She lists frequently prescribed medications, explains how they work, and identifies their side effects. The bulk of the book picks up where medical treatment leaves off: the use of diet and herbs, regular exercise, stress and pain reduction techniques, and methods for better sleep are discussed. Cohan includes self-assessments, meal plans, herbal recipes, and a week-by-week recovery plan to create a complete holistic approach to bladder wellness. Information on specific diets, a review of the range of conditions that can cause pelvic pain, and a thorough guide to additional resources complete the book. Buy on Amazon
Dr. Robert Echenberg has been a pioneer for 2 decades in the diagnosis and management of pelvic, genital, and sexual pain disorders. His book, “Secret Suffering” is highly relevant for up to 20% of young women and their intimate partners. Pain in the pelvic region including bladder pain syndrome, vulvodynia, pelvic floor dysfunction, rectal pain, peripheral neuropathies, hyperarousal disorders, and other persistent painful diagnoses in the hips, groin, tailbone, and pubic area affect up to 30 million reproductive-aged women in America alone. Dr. Echenberg has also lectured internationally in his efforts to raise awareness of these disorders in the wider healthcare community. Get a copy of Dr. Echenburg’s book here:
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