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
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".
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:
"My real resume was in my cells." Vincent Freeman in Gattaca
How many times do you hear or read: The future is here? Well, for the first time, I really believe that the future of treating IC/PBS in a completely new and exciting way has arrived and it is both encouraging and inspiring. Once again the introduction to the doctor that I will introduce in this blog entry and his treatments for IC/PBS, was done out of kindness and advocacy for IC patients, and I would like to publicly thank this professional in the world of IC for introducing me to Dr. Elliot Landers.
I had the honor of being introduced to Dr. Elliot Landers-once again through the virtual world-and then via telephone and although our first phone conversation was brief, I felt so very hopeful for the millions of people suffering from IC/PBS. Imagine a treatment for IC/PBS (or other degenerative diseases) that utilizes your body's own stem cells, conducted in a center specializing in stem cell therapy, completely supported by a team of dedicated doctors that are blazing a trail in this area? After my conversations with Dr. Landers I realized that no longer will one have to imagine this scenario: one can become a part of it! The excitement Dr. Landers has about stem cell therapy and the limitless possibilities for how stem cells can help people suffering from IC/PBS (and other degenerative diseases) is contagious and when he said "I believe stem cells are the wave of the future in medical science" I believed him and realized that the technologies he was speaking about are happening right now. Today.
Dr. Landers has an extensive background in biochemistry and has worked in the field of urology and general surgery. Most recently he has worked in the field of Male Hormone Replacement therapy as well as ground-breaking work in urologic stem cell therapy. Dr. Landers, along with Dr. Berman and Dr. Braslow, have been working with adult mesenchymal (non-embryonic) stem cells to study the benefits of: harvesting the patients own adipose (fat)-derived stem cells through out-patient surgery, and then reimplanting the adipose cells back into the patient in order for those cells to seek out and regenerate the cells in parts of the body that have become damaged (like the bladder in IC/PBS patients). Drs. Landers, Berman and Braslow have recently formed the California Stem Cell Treatment Center out of Rancho Mirage, CA where they will begin to provide stem cell therapy treatments to patients suffering from a multitude of degenerative diseases (including IC/PBS). Here is their website, I would highly encourage setting aside some time to read through this website as it very well put together and has a lot of information about stem cell therapy and includes a hyper-link to a PDF file explaining the potential benefits of stem cell therapies for IC/PBS patients: http://www.stemcellrevolution.com/
It is important to point out that stem cell therapy is not FDA approved here in the United States and so the work that is being done at the California Stem Cell Treatment Center is being conducted as patient-funded pilot studies to provide further data points for adipose-derived stem cell research, which began in China. The doctors at the California Stem Cell Treatment Center are initially offering adipose stem cell therapy at half-price in the amount of: $4500.00 U.S. It is this demonstration of generosity and the courage to carve a path in unchartered territory here in the U.S. that the work that Dr. Landers and his colleagues are undergoing brings me great hope for the millions suffering from IC/PBS.
Dr. Landers has been working closely with Jill Osborne, President and Founder of the IC Network and in one of their conversations he explained the benefits of utilizing stem cell treatment for IC/PBS in a nutshell: "Stem cells treat degeneration and inflammation on a systemic level, naturally focusing on the body parts most afflicted but not ignoring the overall extent of disease." This makes sense on so many levels because I have talked with countless IC patients who feel that IC pain and symptoms seem to be about more than simply their bladder. Perhaps that explains why current and past IC treatments which focused solely on treating the bladder have not been completely successful, for instance there are a countless number of IC patients that were in excruciating pain who opted to have their bladders removed, only to discover to their horror that the pain of IC remained.
The future for treating IC/PBS patients with stem cell therapy is here and it is happening now. I am thankful to have had the opportunity to speak with Dr. Landers and to hear about the work of adipose stem cells and the opening of the California Stem Cell Treatment Center in California. I wish Dr. Landers and his colleagues much success in this arena and I look forward to hearing how stem cell therapy assists those suffering from IC/PBS.
This blog is for the doctors who thought my bladder and vaginal pain was one of psychology, not of physiology. And it is for the duo of urologists, the first of which rolled your eyes while you scoped my urethra and said I didn't have IC because I didn't have the ulcers, and for the second who laughed when I told him the medications made me feel worse and that I wanted to approach IC holistically. It is for the friends who stopped calling me once I shared with them about my new private horror of a life lived with chronic pain. I cannot forget the co-workers who made the nasty comments about my IC diet and openly wondered if I was anorexic for eating the way I did. And a special honorable mention should be paid to the still unknown person who removed my carefully prepared IC friendly container of food from the shared work refridgerator and left it out at room temperature for 4 hours so that you could pull out your Coca-Cola for your break.
Without all of your doubts, poor treatment and 'your way or the highway' approach to treating or discussing my IC I would not be as well as I am today. If I would've listened more and believed that my pain and symptoms could not improve then I would feel the same way that I did six years ago. Perhaps I would have acted on my thoughts of suicide. Or perhaps I would have been forced to go on disability because you did not explain to me that untreated IC can continue to cause further tissue damage. If I would have continued to listen because you had the inititals 'M.D.' behind your name, I would not have found my voice to question a urologist that gives cystoscopys without anesthesia or lidocaine. And I would still consider as a friend someone that I could not explain my reality of chronic illness and pain without fear of ridicule or embarrassment.
Thanks to each of you for pushing me to look deep within myself and to seek out the answers for healing locked inside my DNA. I know now that there is no secret pill for curing IC-but a lot of hard work, an IC friendly diet and being surrounded by supportive family, friends and doctors goes a very long way towards feeling better. I do wish you all well but mainly I wish that over the past six years you have realized the damage that such attitudes can and will do to the people you address as: patient, client or friend. Thankfully I used your treatment of me as a gift of how not to treat people. And for that, I will always be grateful to each of you.
There is something calming and peaceful about writing the first blog post of 2011. Outside the snow is falling down making the world smell fresh and clean with winter's white rain. As I go through the motions at my new job or while folding laundry at home, snippets of my conversation with Dr. Matt Rosenberg flit into my thoughts: IC is a symptom diagnosis...IC can be diagnosed and treated if the PCP nows to look for pain, urgency and frequency. I wonder how many people will be diagnosed with IC in 2011?
I hope that the work of Dr. Rosenberg and many other doctors, specialists and people who play an active part within the ICA, ICN and IC patients continue to make a stand and to fight for disability benefits for IC patients, awareness of IC continues to be spread, and better protocols for diagnosing and treating IC continue to become the new and less painful standard for this year. I am reminded by the example that one small candle can bring light into darkness. Each of us have a role to play in the world of IC and whether or not you have a medical acronym behind your name, we can continue to shine light and hope for millions who feel a pain and a darkness they might not have been aware of until recently.
Currently I am reading a new book written by an IC patient and nurse and I am filled with encouragement about connections she found with IC and how consuming gluten can attribute to IC pain and symptoms. Expect to hear great things about this book and this nurse in upcoming blogs! I have nothing but hope and encouragement that by continuing to spread our knowledge and our experiences we can shine our small candles of hope to other IC patients. Well I am off to refill my mug and to enjoy the silence of snow falling on the roof.
I talk about the experiences I had with Western doctors with full disclosure within my IC manuscript-both good and bad experiences. A common theme throughout the many long months of trying to get a definitive diagnosis was that it was so frustrating to not have a name for the disease, but to encounter calloused or uncaring doctors while searching for answers. On a couple of occasions I was left feeling like a child that has been naughty: How dare I ask questions of the doctors who had gone to medical school!
I'm sure many of you reading this experienced painful and intrusive medical tests such as IVPs, cystoscopies, and countless vaginal examinations prior to getting a diagnosis of IC. One of the saddest aspects of having a bladder disease is the constant stream (no pun intended) of attention to incredibly intimate parts of our bodies. I will never forget how one male doctor in particular told me that I probably just had bacterial vaginosis and that it was very important that I wiped correctly after a bowel movement in order to not spread bacteria into the vaginal area. Really? I am so glad that he was able to enlighten me about this as I'm sure that most 27 year olds do not know how to wipe themselves correctly.
To be fair though, I did encounter many compassionate male doctors who will willing to work with me to find out what was causing such intense pain within my bladder and vagina. I will always be grateful to them for their tenacity in ordering more and more tests and for treating me like a person and not just another uninformed person of "the weaker sex." In our society we are often to quick to point out the mistakes that other people make, but we don't always tell people how much we appreciate the good things that they do. So along this vein I have started hand-written "thank you" notes to doctors, etc. to demonstrate my thankfulness for their efforts to help me heal.