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
For once I am almost at a loss for words as my heart is filled with gratitude for all of the ICPBS patients, doctors and patient advocates who have offered up support and encouragement to myself and others through sharing of your personal stories and sharing the work that you do to help others suffering from chronic pelvic pain conditions. The 4th birthday of ICPBSSupport page could not, would not be here if it wasn't for each of you and I raise my wine glass filled with IC-friendly sparkling water and I cut into some IC friendly fruit and pretend that next to the fruit is my favorite birthday cake: Angel Food as I celebrate with you another milestone for this support forum.
The birthday milestone for ICPBSSupport follows only a handful of days after I attended the first annual Alliance for Pelvic Pain in Bethlehem, PA created and hosted by Dr. Robert Echenberg, Executive Director Alexandra Milspaw, PT Amy Stein, Vulvodynia advocate Nancy Fish and Dr. Coady. The Alliance was less a conference and more of a gathering together of a team of very passionate and compassionate doctors and healthcare practitioners bringing together wisdom, encouragement and the overall 'picture' of chronic pelvic pain conditions, how they overlap and are connected, combined with wonderful support and mind/body/spirit ways of coping and healing. Every single person that I spoke with felt inspired, supported and finally able to connect and begin the healing process after realizing that we are not alone! I commend the entire Alliance team for putting together such a wonderful weekend and I also want to thank each of the participants who made the long and arduous journey to attend this event. My heart is overwhelmed with gratitude this week.
This is what I remember. I remember those people who did not understand I had a severe illness where toxic smells or bite of mild cheese could cause a pain so fierce within my bladder that I had to force myself not to lean over with a wail. I remember their mocking stares as I silently and begrudgingly ate the same four items at lunch every day. Cold plain chicken. Broccoli. Steamed brown rice. A hunk of mozzarella cheese. Water filled my glass every single day. For Thanksgiving my fiancé and I turned down every invitation. 'We already have plans, thanks so much for the invitation.' We would say. My fiance' made himself dinner while I made my own.
New year's eve and I would fill a wine glass with sparkling water, forcing festivity upon myself, while avoiding the mirror that would break the image of someone happy and looking forward to another year. Another year without good food, wine and socializing with family and friends. Another year without travelling. Another year without my sexuality.
I remember everything. The harrowing days of excruciating pain. Watching people eat all of the foods that caused me further pain. Every single radio, television or magazine ad seemed to scream at me constantly that I was not a vibrant, sexual woman engaged in a normal life. Some friends and family faded out of my life or told me to take some cranberry capsules for my bladder infection that seemed to have been lingering on now,-for what- five years now? 'Get a grip.' their eyes said to me as they never tried to pronounce even once the name of the disease that was my constant companion.
I remember my bladder feeling full of lead and my vagina feeling like it was on fire. On and on and on again. Every single day. I remember the first time an IC patient became my friend and my confidant. I remember the relief I felt in that moment. 'I am not alone. I am not crazy. I am wanted.' I remember a vow I made to myself and to my first IC friend, that if I overcame IC I would work to help others, by supporting them and being an advocate for their pain and isolation. I remember everything and because of this I say to every IC patient "I believe your pain is real. I also believe in you and your strength. Hold onto hope, as I hold out my hand in friendship."
We are excited to announce a new interview here on the ICPBS Support website. The fourth interview in our series is with Catherine (Cath) M. Simone published author of three IC books and IC patient (now in remission) as well as patient advocate. You don't want to miss this interview with the well-loved Cath! We are so excited to have had the opportunity to speak with her and share her thoughts about IC that instead of posting her interview through the blog forum, we gave Cath her very own page! Check out the full interview transcript through the main home page and then look for her interview page on the "More" drop-down.
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:
Do you remember the moment when you first stumbled across the symptoms of IC? Perhaps it is because you yourself were struggling with the symptoms and waiting desperately for a diagnosis or perhaps you were searching on-line for diseases or conditions that matched your symptoms while you waiting for your doctors and insurance company to approve some medical tests. Remember that moment of horror and recognition as the group of symptoms matched those that you were experiencing exactly-yet you continued your search in finding diagnosis that was less horrific and more full of hope in recovery?
I will never forget experiencing all of the emotions of feeling like I had suddenly boarded an express train filled with sick people when most of my life I had proudly walked to my destination, filled with hope and choice about the destination. It as I remember these feelings of my own journey to diagnosis and the choices I made over six years to put my IC in remission that I reflect upon the events of the prior week. I had the honor and privilege of presenting a brief overview of IC to a roomful of close to fifty people within my community who had never heard of IC. The look of shock and sadness on their faces as I explained the symptoms and pain on IC instilled in me an even greater passion to share the story of IC and to seek out ways of helping IC patients and their families in the coming years. Great things are on the horizon and after my brief stint into speaking in public about it last week, I am even more encouraged to push myself out of my comfort zone to bring support efforts to the world of IC. Those who hear truly want to help!
Often I have overwhelming feelings of gratitude that my IC is in remission. It is important to also write about the hope that abounds in the IC community in the areas of advocacy, research and diagnostic and treatment protocols that simply did not exist 7 years ago when I stumbled down the black and painful rabbit hole into the world of IC. From the continued efforts of the IC Association and the IC Network to doctors such as Dr. Matt Rosenberg uncovering fast and as close to painless diagnostic tools for diagnosing IC to doctors in the forefront of IC treatments such as histamine blockers and stem cell therapy treatments such as those being utilized by Dr. Elliot Landers there is hope to share with all IC patients. It is so easy to share the truth of living with IC that it causes extreme pain, discomfort and floods an IC patient with feelings of guilt, shame and depression and it would be wrong to cover up these truths, but in the same sense, it would be wrong to only focus on these truths and not spread the word that hundreds of people are working tirelessly to help IC patients around the world.
Plus there are countless people, myself included, who have been able to turnaround a diagnosis of 'incurable IC' and after hard work through the use of both Western and holistic medicine and treatment protocols that IC, can in fact, go into remission. There is so much hope and help in the world of IC right now that I hope that I am able to spread to each of you suffering from IC...you are not alone and you are definitely not forgotten. It is my hope and my truth to continue to spread the word about cutting edge IC treatments in the hope that each of you find the comfort and support for your IC. If you have not done so I would highly encourage you to read the series of books by IC patient and advocate Catherine Simone to read her words of help and health. It is my duty to also share my path to remission, along with the memories of pain and tragedy living with severe IC.