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".
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
If you are reading this blog entry perhaps you have been following my journey from IC and sexual pain patient to advocate and community awareness liaison for many years, or perhaps this is your first time visiting this website and blog. My journey has included over four years of corresponding with IC, chronic pelvic pain and sexual pain patients such as yourself, and I have been honored by both your stories and your courage. I always knew that if I overcame IC and my pelvic and sexual pain conditions that I would give back to others still suffering some day, I just never expected where the journey would lead me! We have laughed together and cried together. We have shared stories of heartbreak as well as of hope. Through it all we have been there together, learning more about chronic pain and how all of the pelvic and sexual pain is interconnected. We have learned through book reviews and doctor and patient/author interviews. (Thanks again to: Dr Lander, Dr Rosenberg, Dr Wiseman, Wendy Cohan and Cath Simone for sharing your stories with www.icpbssupport.com over the past four years!!)
I have shared everything with you: poetry, snippets from my own journey with IC and chronic pelvic pain as well as notices about pharmaceutical shortages and information in the news from both the IC Network and the Interstitial Cystitis Association. It feels wonderful to connect with so many people within the community providing support and advocacy! The one thing that I have kept hidden from each of you is my heart's desire to help IC and sexual pain patients on a deeper level: to form a global focused non profit with its sole mission to provide hope and resources for bladder, pelvic and sexual pain patients. My wonderful team has helped me with starting a crowdfunding campaign through Indiegogo (which includes a video of IC and chronic pain patients sharing their stories and features Dr Robert Echenberg, Alexandra Milspaw, Amy Stein and Dr. David Wiseman). Please watch the video and share with your friends, family and co-workers and if possible please consider donating to the crowdfunding campaign so that we can immediately begin our mission work once our new non profit, Bridge for Pelvic Pain is up and running! Together, we can provide hope and support!
Link to the Indiegogo campaign:
One of the hardest things for an IC patient is legitimacy and awareness about what IC really is. Thanks to some incredibly hard work on the part of the Interstitial Cystitis Association (ICA) along with their tireless work to ensure legislation is written to ensure that IC and related conditions receive funding dollars to help with diagnosis and treatment protocols, their recent 'Get the Fact's awareness campaign has literally, gone big with a new nation-wide billboard campaign. Imagine driving down the interstate and being able to show your friend or loved one a sign for IC written in huge letters! Amazing kudos go out to everyone at the ICA for this campaign and believe me, the next time I drive to Denver, CO I will be searching for the Get the Facts billboard off of I-25. I can assure you that I will point to it and smile. Here's to an incredible job and for spreading IC awareness in a large an impactful way, ICA!
Thanks to the efforts of Jill Osborne, founder of the IC Network, IC now has a dedicated month for spreading awareness about IC on a global level. Every September when IC Awareness Month unfolds, I am reminded to reflect on how IC has affected me personally as well as to continue to increase my own personal efforts of spreading awareness about IC. For anyone either directly or indirectly impacted by living with IC it seems like such a simple thing to tell someone about IC with the expectation being that they have either heard about the disease or might quickly understand the pain and symptoms involved with being an IC patient.
I am constantly reminded about how incorrect this assumption about how two seemingly innocent letters, once put together, can spell out a complete change in someone's life for the rest of their lives. Using the acronym 'IC' although easier to pronounce and readily recognizable amongst the community it definitely does not give weight to the sheer magnitude and seriousness that living with a chronic pain disease really is. So for anyone who might be reading this article about IC for the very first time, I will try to spell out what IC means to someone who has never heard of it before in the hopes of continuing to spread the ripple of awareness out past the medical community and into mainstream vernacular, like a stone cast into a placid lake.
IC is the acronym for Interstitial Cystitis which loosely translates to a chronic and inflammatory condition within the muscle tissue of the bladder. That being said Interstitial Cystitis is no more a simple bladder disease than cancer is simply cancerous cells wrecking havoc in a cancer patient's body. IC is incredibly and utterly painful. Speaking from personal experience when my IC pain and symptoms were at their worst for many years on a scale of 1-10 my pain level was a 20. The pain is in and around the bladder and the bladder is often described as feeling 'heavy', painful and as if it contained pebbles inside. Chronic and extremely disruptive amount of time is spent urinating. When I say extreme I am talking about urinating or feeling the need to urinate every 10-15 minutes to the point that a lot of IC patients are unable to sleep at night. But that is just the pain and symptoms of the bladder.
Men with IC (for yes it is true that men can have IC too!) can experience pain within their testicles and have severe pain after ejaculation. For women the pain radiates from the bladder into the pelvic region causing pain in the vagina, labia and surrounding tissues and muscle groups, and the pain of IC often intensifies with the fluctuation of hormones throughout a woman's menstrual cycle. On top of all of this both men and women can experience excruciating pain during and after sexual intercourse to the point of avoiding sexual intercourse completely. This combined with the severe pain, misunderstanding and lack of awareness about IC can cause a tremendous disruption in normal day to day activities such as work, college and raising a family. Add to this a complete spiral into depression from the constant and unrelenting pain and the feeling of isolation and not feeling like a 'whole' person is very common.
Food, or should I say the removal of food, is another component of living with IC that creates more feelings of depression and isolation because the simple act of eating food can cause excruciating pain for the IC patient. This is due to the IC patient's layer of protection which lines the outer wall of the bladder being compromised so any time the IC patient eats foods that are spicy, acidic or found to cause an IC 'flare-up' (this list is too large to list here. It is easier to state the most IC patients are only able to eat a handful of foods. Period.) and so therefore their diets are extremely limited and restricted. Now if you have never had to have years pass by when you have only been able to eat a handful of foods day in day out, ignoring the ability to eat out, drink alcohol, or enjoy any type of holiday food or dessert, try to imagine one Christmas, or one Passover not eating any of the special foods that have been passed down for generations in your family. It really wouldn't seem like much of a holiday, would it? For an IC patient a holiday is simply a day to be endured. A day filled with pain, depression and eating the same food that was eaten last week, last month and last year.
So in this month of IC Awareness I would ask you to write to your Senators for more funding for IC, go to the IC Network or IC Association websites and read about IC and pass along the information. You never know that the person that you sit next to on your daily commute to work or the person serving your dinner at your favorite restaurant just might be living with IC. Awareness
The luna moth is one of the most beautiful winged insects with a hauntingly beautiful and sad tale to tell. It takes close to four hours for their wings to unfurl and their entire lifespan only lasts for seven days. Their sole purpose? To seek out a mate in order to perpetuate the cycle of luna moths. The most haunting fact of all is that luna moths do not have mouths and do not eat or drink once they have transformed into the moth stage.
When I recently read about the luna moth I was so taken by their story and that shivers ran down my body. I immediately was drawn to the similarities between luna moths and IC patients that flitted into my mind like the green gossamer wings of these beautiful creatures. IC patients are beautiful people on the outside-most people do not know the struggles they have endured on a daily basis-and as they flit from task to task they are often unable to give voice to their pain and discomfort. They have been silenced by their partners, friends, family members and sometimes even their own doctors who feel that their pain is imagined or not as intense as it truly is so that the IC patient might as well not have a mouth to speak their truth. I feel it is my job as a recovered IC patient and advocate to help spread awareness and give voice to these millions of voiceless patients who are unable to raise their voices in a collection of cries for help and understanding. You are beautiful beings and I hope that your pain and the truth of your painful burdens take flight and are carried on the winds to all of the corners of the earth.
As I contemplate on writing one of the last blogs of 2011 I look back and reflect upon the many IC patients, advocates and doctors who I have spoken with and I realize a common thread of resiliency and hope. Looking forward to 2012 I see even greater advances in technology, treatments and advocacy for IC patients and I am filled with even greater hope. So no matter your religious beliefs, whether you light the candles of a menorah, unwrap Christmas gifts by a lighted tree, or celebrate the winter solstice, I would encourage you to offer a prayer for the coming year. I know that I will send one out to all of the IC patients both met and unmet and one for all of the tireless doctors, researchers and advocates in the numerous fields of study.
On a personal note I anticipate great things in the coming months for the ICPBS Support website. Look for more interviews with doctors from various backgrounds and fields of study, patient interviews, and much, much more! I am also hoping to make a big announcement in the late spring or early summer months. Thanks, as always, for your kind notes of encouragement and your courage in dealing with such a painful condition. Happiest holidays to you and your families! And I leave you with an inspiring, jaw-dropping video to give you a glimpse of what the medical community and doctors such as Dr. Anthony Atala are doing to advance technologies in the areas of organ and cell reproduction:
As with most things with life age and circumstances can knock us to our knees and show us a completely different view of a situation, a belief or and idea that we felt so sure about years prior. Unable to have the knowledge and understanding of a diagnosis of an incurable condition such as cancer I strove to shed some light on the extreme pain, loneliness, depression and isolation that accompanies someone diagnosed with a chronic pain disease. Initially I was hoping for the same level of research, insight, empathy as I lost six years to the pain and loneliness lived with IC but I realize that comparing IC or any other chronic pain disease to a terminal disease is like trying to compare pine cones to calligraphy pens. Simply stated a terminal disease and a life-sentence of a painful chronic condition are two sides of the same coin, where with one your pain and immortality slips by more quickly but you would give anything for one more day, month, year to live in spite of the pain whereas a lifetime of suffering pain causes you to measure each moment more slowly waiting for the years to go more quickly so you can pass away into painlessness. Like the edge of a coin pain and immortality blur and are so closely linked it is hard to separate the one from the other. The cancer patient seeks time and for the remainder of their days to be as painless as possible. The IC patient seeks compassion and for also for the remainder of their days (years) to be as painless as possible. In this sense the two are similar yet oh so different.
Recently I have been with a close family member suffering from cancer and journeying closer and closer to a final chapter in her life, I feel a sense of joy and sadness as well as both an emptiness and a fullness about life. I cannot understand the pain of her cancer but I can understand how the pain in her body can sometimes supersede the actions of the world at large. Gazing into her eyes I am reminded of my own immortality and a sense that my mission to help others suffering, either from IC or cancer is a gift both priceless and filled with pain. Suffering, whether over the course of months as a cancer patient or over a lifetime as a chronic pain sufferer, can never be easy but if we surround them with our presence and unconditional love then we can gently carry part of their burden of suffering. In this small way I am learning to be an advocate of both those suffering from chronic pain diseases as well as cancer instead of trying to point out the differences. As the Buddhists say, "Life is suffering with brief moments of joy." Try to be the joy in someone's suffering.
My apologies, dear readers and IC patients, for a slight delay in this week's blog post. It seldom happens to me but I recently had the wind knocked out of my sails by someone who wrote a very personal and vindictive comment to me about the inappropriateness of sharing with others about IC on an international forum. It has always been my hope and intention to spread awareness of IC in whichever forum I am able to because who knows which person knows someone who knows someone with IC? IC does not know international boundaries and it is my hope, and the hope of countless others, that IC becomes a household name someday.
I hate to, yet again, draw comparisons to cancer because there really is no comparison to a chronic pain disease with a painful and incurable diagnosis of cancer, but I feel that I must draw the comparison solely because within the same international forum that I posted information on IC awareness there have been thousands of posts on cancer, all received with much gratitude and approval. I had never seen a post about IC and thought my posting for IC awareness would garner the same gratitude for spreading awareness about a disease that affects millions of women and men (like cancer) but was instead treated to a vindictive note that I should not be speaking about my 'cause'. I will not be quiet. And I do not consider IC to be my little pet 'cause'. I suffered serious, debilitating, suicide thought-driven IC pain and symptoms for five years and I have stayed active within the IC community because I want to be able to support the millions of other IC sufferers with words of encouragement and support. IC is not just a little pet cause of mine. IC is a PASSION for me and I want to be allowed the same respect for sharing awareness for those suffering from IC in the same vein as cancer awareness and cancer survivors. I refuse to allow one private note to quiet me or to think that in some way spreading awareness for an incredibly painful disease is shameful or inappropriate.
IC is real and I will never stop spreading the word about what the ICA, the ICN and doctors and researchers are doing world-wide to diagnose and treat this ravishing disease. I will not take a private note personally, but I will personally see that my efforts to spread awareness double in the coming year. Challenge me. I will use the same force and effort that I used to prove countless doctors that I could not get my IC into remission. There is a lot of fight in me yet and this time I will turn it towards those who matter a great deal to me: IC patients.
Sometimes, in the midst of the hustle and bustle of life, all of the difficult things you have gone through over the years rise up and stretch before you and then shimmer and morph into something, if not beautiful, but shimmering and unexpected. Call it a higher purpose. Or a reason for why the dark times happened all of those countless days and nights. I never imagined that I would someday speak to men and women with IC all around the world or be connected with doctors and health care professionals working on cutting edge technologies to help with chronic conditions.
After so many years of being the 'odd one' at work eating her strange and bland meals with eyes full of shock and the eyes squinting to look at my thin frame with the question of 'anorexic?' not completely hidden from their gaze, I almost pinch myself now when co-workers shyly ask me why I eat as well as I do-and can they get the recipe? And then there is the remorse and guilt I sometimes feel in speaking or writing that my IC is in remission because I never want to come across as cruel or uncaring for the millions still suffering. To hear from a fellow IC patient that it is good to hear someone who made it through the other side of the dark days of IC able to enjoy life gives her encouragement with her daily struggles, left me speechless.
A very dark and lonely road began my journey with IC but along the way I met a handful of beautiful souls working through their own health struggles who encouraged me to keep on the path towards health, and I am forever indebted to them for their courage and strength to encourage me when they themselves were living in horrific pain. One dear friend succumbed to the pain of IC complicated by some other serious and life threatening health conditions and I can still hear her gentle and straightforward words of encouragement and advice when I close my eyes. (Sweet J.P. I miss you so much-especially in the fall!) It is for her and for those still living with the pain of IC that shimmer along the side of the road, reminding me of the higher purpose of my life. I thank each of you for your continued encouragement, questions and support of me, my IC story and of this blog and website.