January marks the official start of Vulvuary to spread awareness of Lichen Sclerous and vulval health issues. Please go to their website for downloadable resources for private screenings and help if you are already an LS patient. www.lichensclerous.org
By: Carin E. Willis, Founder and Executive Director of Bridge for Pelvic Pain (Reposted with permission from Bridge for Pelvic Pain's website).
Living with chronic pain can be one of the most isolating experiences in a person's life and when the chronic pain exists within the most intimate and private parts of the body it can seem even more so. There are more than twenty-five chronic pelvic, sexual and genital pain conditions and millions of people (both women and men) around the world suffer from these conditions yet speaking about them openly can be difficult due to the numerous cultural taboos that exist. It seems we all live in this great paradox in which we can be surrounded by images in the media, books and music which openly shout out to the world that we are sexual beings and everyone seems to be having incredible sexual encounters 'all day everyday'. But what happens if you tell a co-worker, a friend, a manager or a loved one that you deal with chronic vaginal or penis pain, or that you can no longer enjoy sexual intimacy due to the pain that it causes, and the sound of silence can echo in your ears like wind on a Wyoming mountaintop. If your words are not met with this silence you might be met with great cruelty: disbelief or words spoken out of fear or from an uneducated belief that either the pain does not actually or exist or if it does exist then the belief that the 'cure' should be one of psychology rather than biology.
Reflecting on my own experiences with chronic pelvic and sexual pain, and sifting through the multitude of discussions I have had with chronic pelvic pain patients throughout the world over the past decade, I wondered about all of our differences and our similarities. Chronic pelvic pain patients come from every ethnic and religious backgrounds, socioeconomic status, and the conditions affect men, women and children. Patients include those who are married, single, virgins and first-time parents. For some patients the pain has existed since childhood and for others the pain appeared after an accident or injury. Although at first glance it appears that our chronic pelvic pain stories are too different to find commonalities, many exist.
We are all linked by our connection to living with chronic pelvic and sexual pain conditions and by our desire to have our voices heard that these conditions exist, our pain is real, and we all have a desire to have access to education and treatment for these conditions. Dr. Echenberg, Founder of the Institute for Women in Pain, echoes this thought in the book he co-authored "Secret Suffering: How Women's Sexual and Pelvic Pain Affects their Relationships" when he expresses that some of his most effective treatment of pelvic pain patients he treats in his office happens when he listens and validates that their pain is real. This sentiment is the very reason that Bridge for Pelvic Pain is in existence today: To connect the chronic pelvic pain patients with the resources and education for integrative treatments. And provide these patients with the hope that they are not alone in their suffering by realizing there is a network of caring chronic pelvic pain patients, doctors and specialists who are working tirelessly to support them and provide effective pain treatments.
We are excited and honored to announce that Bridge for Pelvic Pain (founded by Carin Willis) was invited to moderate a Facebook Chat next month via Pain Pathways Magazine. The chat will discuss women's chronic pelvic and sexual pain conditions. Co-moderators include two Bridge for Pelvic Pain Board Members, Karen Liberi, PT and Dr. Elliot Lander! Please register to attend the event scheduled for Thursday November 6th at 8 PM ET and have your questions answered by two pelvic pain experts.
A new publication by Dr. Elliot Lander on pentosan in liposomes (which act as a bio-adhesive to significantly improve dwell time and efficacy). At this time the compound GMP isproduced and made available from Central Pharmacy which is a compounding pharmacy in La Habra California. If you are a doctor or healthcare provider treating IC please contact Dr. Lander's office at: www.stemcellrevolution.com
More information has recently surfaced that chronic pelvic pain conditions including IC and sexual pain conditions arise due to the nerves and pain signals within the very complex pelvic floor area. Recent studies have shown that pelvic pain exercises and work with a pelvic floor physical therapist in combination with other healing modalities has been effective in helping with pelvic pain related conditions. Amy Stein, DPT, BCB-PMD has a physical therapy office located in New York City and she has been working with pelvic pain patients for many years. Amy is also the author of the book "Heal Pelvic Pain" (also reviewed here on ICPBS Support-please search for it under book review archives). Amy was kind enough to send me a copy of her newly released DVD "Healing Pelvic and Abdominal Pain: The ultimate home program for patients and a guide for practitioners" in order for me to review it and spread awareness about this new pelvic pain educational tool.
This DVD is a great addition to pelvic pain support resources and tools for the newly diagnosed patient as well as for patients who have been struggling with the myriad of pelvic pain related conditions. I could see the benefit to the patient for purchasing this DVD to learn home care techniques (stretching, breathing and massage) to either supplement their work with a local physical therapist or as a tool to utilize for those patients who live in remote locations that do not have access to a trained and licensed PT who specializes in treating chronic pelvic and sexual pain conditions. I can also see this video as being a great resource for patients living in other countries who need resources that they can view from the comfort of their own homes. This DVD includes beautiful calming music and each section is clearly marked so the patient can book mark certain sections that they are working on.
Amy's video begins with an introduction to breathing exercises to help the pelvic floor become more relaxed. Amy provides breathing techniques for both lying down as well as sitting. The video progresses in a very gentle, easy to follow manner and proceeds from breathing exercises to external massage techniques to help minimize the pain from abdominal and pelvic pain. I tried the exercises myself and found them very soothing and wished that I had been taught the colon exercises when I had extreme IBS and IC related pain. After demonstrating abdominal and colon massage the video moves to massaging trigger points and scar tissue. This part of the video really provides good home techniques and visuals. The emphasis in this part of the video is rectal pain massage which would provide relief for those suffering from pelvic and rectal pain and perhaps the pain of hemorrhoids or pain after surgery or child birth.
The final section of Amy's DVD focuses on providing a gentle whole body massage in both standing and seated positions. This section features some ways for utilizing a personal massage using hands or through the use of a tennis ball or a massage stick which can be purchased easily on-line. I like the focus of this section because it also emphasizes slow breathing and being mindful about not further hurting oneself by stretching or pushing too hard on the muscles. Amy's DVD closes with some wonderful pelvic floor stretches and breathing exercises which provides various modifications in case the patient has other injuries or conditions that might prevent certain stretching techniques. Overall, this DVD is a good tool for a pelvic pain patient as well as a resource for a physical therapist or doctor's office which focuses on any of the chronic pelvic pain conditions. For information about Amy Stein or how to purchase her DVD or book please visit the following websites:
Dr Robert Echenberg: Featured Doctor in Pain Pathways Magazine about Pelvic and Sexual Pain Conditions
Robert Echenberg, MD is featured in the July Pain Pathways issue speaking about the work that he does to provide integrative treatments for chronic pelvic, sexual and genital conditions. Dr. Echenberg is the founder of The Institute for Women in Pain is also the co-author of "Secret Suffering: How Women's Pelvic and Sexual Conditions Affect Their Relationships". Dr. Echenberg is a Founding Board Member and Advisory Committee Director for Bridge for Pelvic Pain. This article highlights the great passion for helping patients with chronic pelvic pain conditions that Dr. Echenberg continues to become known for. Here is a link to the article so you can read it for yourselves and I know you will agree with the author that Dr.Echenberg is a "grassroots guru".
Bridge for Pelvic Pain Goes Live with Global Reach
New non-profit seeks to help those with chronic pelvic, sexual and genital pain conditions.
Colorado Springs, CO , June 2, 2014 - Bridge for Pelvic Pain recently announced their formal launch as a new non-profit, established for the purpose of serving the global community of chronic pelvic, sexual and genital pain patients. They are the only U.S.-based non-profit positioned as an umbrella organization, with programs to serve the myriad of these chronic pain conditions. Bridge for Pelvic Pain was founded as a grassroots movement by a chronic pelvic pain patient and advocate.
The Board is comprised of doctors, nurses and patient advocates who are nationally recognized within the chronic pelvic, sexual and genital pain community. Initial funding for Bridge for Pelvic Pain was carried out through a global effort of donors which included patients, patient advocates and pelvic pain community experts through a crowd-funding campaign.
Founder and Executive Director Carin Willis stated that her desire to form a new non-profit to serve the global chronic pelvic, sexual and genital pain community stemmed from, “A desire to provide education, resources, and just as importantly, hope, to this community because of my personal experience as a pelvic pain patient and through countless conversations with similar patients I spoke with over the course of nine years. It is also my desire to provide this community of patients, and the medical community which treats them, with both a connection to resources and hope through an integrative approach to treating these complex diseases. I am excited about current cutting-edge treatment protocols that have been developed by a handful of medical doctors, health care providers and patient advocates whose work helped form the framework for Bridge for Pelvic Pain's educational programs.”
The non-profit, headquartered in Colorado Springs, Colorado, will be an advocate for these patients, as well as work to educate through outreach programs.
About Bridge for Pelvic Pain
The mission of Bridge for Pelvic Pain is to connect the global community of chronic pelvic and sexual pain patients to resources, education and hope through an integrative approach. Visit www.bridgeforpelvicpain.org
We are so excited to announce the formation of a new U.S. based non-profit recently formed to help with chronic pelvic and sexual pain conditions. For those of you that read this blog late summer of last year, we featured an Indiegogo campaign to help pre-fund the start-up costs for this non-profit. Thanks to such an outpouring of support from our funders and the help of founding Board Members and volunteers, we are so happy to announce Bridge for Pelvic Pain! We will be rolling out new Facebook and Twitter pages as well as a beautful new logo later this month, but for those of you interesting in a sneak peek at our website, Mission Statement & Programs, here is our new website: www.bridgeforpelvicpain.org
Please take a peak and share with your friends and family! We are both excited and honored to be able to start a new non-profit to serve the chronci
I had the opportunity three years ago to interview Dr. Eliott Lander about his ground-breaking work in the U.S. utilizing non-embryonic stem cell therapy for IC patients. At the time of that first interview his work was so new that his center, based in Southern California, had only had a few IC patients utilize this therapy. Fast-forward three years and Dr. Lander's stem cell therapy for treating IC as well as patients with Lichen Sclerosus has become a very effective and innovative for these complex conditions!
In addition to treating IC with a treatment that removes healthy stem cells from the patients body then reinserts these treated stem cells back into the bladder lining, Dr. Lander also created an innovative way for IC patients to have Elmiron, the only drug that is effective in rebuilding the damaged cell walls of IC patients, instilled using an outpatient procedure. The future-thinking and less invasive treatment instills Elmiron into a small catheter in the bladder at a micro level using liposomes. Liposomes are small nano-spheres made out of phospholipids from soybean lecithin.
Last fall, Dr. Lander attended a national conference, the AUA, where he and a colleague presented their findings and success stories in using nano-spheres to deliver Elmiron to IC patients. It is quite an exciting time to be an IC patient and we are grateful for the work of Dr. Eliott Lander! For more information about Dr. Lander's stem cell treatment center or work using nano-spheres here is more information: http://landerurology.com/female.html