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My thoughts on the "Stanford Protocol"
The Mystery of Pelvic Pain
When a patient has pelvic pain, particularly chronic pelvic pain, it's normal to be confused and anxious. You know you hurt "there"... but, darn it, where is "there?" The pelvic cavity is filled with organs (the bladder, bowel, reproductive tract), muscles (pelvic floor), nerves and blood vessels. So when you point to your pubic area, what are you pointing at? That, of course, is the question that haunts both patients and providers.
My approach to pain is to treat it like a mystery that needs to be solved. What is it? Where is it?? Why?? How should I treat it? And, generally, this is what physicians provide to patients. As they talk with you, take your history, and listen to your symptoms, they are trying to visualize what the problem could be and where.
So, for example, if your pain worsens after drinking coffees or sodas, then that is a clue that your pain could be originating from your bladder wall. If your pain fluctuates with your hormones, then perhaps they might look at the reproductive tract as well as the bladder. If your pain has an electrical, searing quality to it that occurs when you sit down but improves when you lay down or stand, then your physician may start exploring pudendal neuralgia and other conditions that change with the position of your body. If your pain is external, they may be looking at vulvodynia. The list and potential diagnoses is long and large.
A physician or clinic can be biased towards specific treatments
But, what patients may not understand is that many doctors, physical therapists and psychologists have specific beliefs or biases that sometimes get in the way. It’s painfully obvious to patients who have visited several doctors who frequently have conflicting suggestions and diagnoses. Some doctors like and believe in specific treatments (i.e. like those who prescribe elmiron to everyone), while others prefer bladder instillations or nerve stimulation. Some urologists assess for pelvic floor dysfunction and recommend treatment, while others never examine or consider the role of the pelvic floor. Ironically, we also know that some gynecologists fail to rule out the bladder as a potential source of recurring pain thus leading to tragic and completely unnecessary hysterectomies for many IC patients.
God forbid you mention an unusually puzzling symptom as I did last year when I experienced a weird "buzzing" sensation near my tail bone. I can just picture the look of incredulity on my primary care doctors face as he read my email as I tried to describe it. My questions to him were simple and logical. I have this symptom. It occurs after I sit for more than a few hours. Could it be the muscles or the nerves? He, thankfully, was equally intrigued but it took visits to my PCP, my ob-gyn, an orthopedic surgeon and a physical therapist before we confirmed that it really was a partially compressed pudendal nerve FROM sitting too long at this computer. (This is why I sit on a balance ball now for half the day).
I think that you and I deserve more than just a guess from a medical care provider as we are trying to get to the bottom of our pain. I like facts and specifics. I want to know what I have and, most importantly, how I should treat it. This takes work and time. You have to observe your pain, take notes about it and, yes, be willing to talk about each and every embarrassing aspect to it. Does it hurt when you have sex? Tell them!
You have to be prepared to talk with several doctors, at a minimum your regular physician, a urologist and, for women, an obgyn. These examinations are a vital part of discovering where your pain can be coming from. And if you’re not responding to treatment, whatever they recommend, you have to be prepared to go back and say “I am not where I need to be. What other options are available? Could we have missed anything?”
Here’s a true patient story. A man was diagnosed with IC and tried every therapy available. For five years he had no progress. He called me frequently as we tried to cover all potential bases... and then one day, he said something to me that he had never said before. He said “Jill. I feel great when I wake up with no pain at all. I don’t start hurting until I sit down for breakfast.” I said “Wow, you’ve never said that before. Have you told your doctors that?” He said “No.” This was a critical piece of information and to make a long story short, he didn’t have IC and now we know why his treatments didn’t work. He had a pudendal nerve entrapment, the primary symptom of which is pain, sharp nerve pain, when you sit down.
Yes, it takes time. Yes, the road is long with many curves. It takes work to figure out how and why pelvic pain occurs. And it takes even more work as you try treatments... and work you must. It’s also vital that you read some books and educate yourself, read new articles about IC and/or pelvic pain on the web, to talk to other patients and compare notes. Look for success stories but don't get taken in my promises of false cures. If you don't know where your pain is coming from, then how can a company selling a pill know where your pain is coming from?
Thoughts on the "Wise-Anderson Clinics For Pelvic Pain"
So, I’m writing this blog to address a question that I’ve received numerous times about pelvic pain programs, specifically the “Wise-Anderson” protocol that is also incorrectly referred to as the Stanford Protocol for pelvic pain. Made popular through a series books called A Headache in the Pelvis, they emphasize the use of “paradoxical relaxation” to reduce pain. Some ICN members have spent thousands of dollars participating in this six day clinic and have been disappointed with their results.
On the other hand, the Wise-Anderson protocol has had several published research studies in credible urology journals and at the American Urology Association showing some success.
I am conflicted. I believe in evidence based medicine and formal research studies are meaningful. But I find myself appalled that patients are being charged thousands of dollars to, for the majority of their time there, learn relaxation skills. I think $500 is a reasonable fee that is still far too high for most patients. Paying several thousand dollars seems unusually high and personally, I can’t afford that nor do I think that most other patients can, particularly when there are so many regional and local pelvic pain physicians, physical therapists and psychologists across the country who can provide care and support without the burden of traveling and paying hotel fees, etc. I would encourage the program developers to be sensitive to the needs of patients who simply lack those resources by developing some free videos that can walk them through some of the basic principles.
I do believe that patients with consistent pelvic floor muscle tension can benefit from muscle relaxation therapy but I do not believe that relaxation therapy can address the fundamental physiological problems found in patients with Hunner’s Ulcers or pudendal nerve entrapments.
If you have gone through this program for your IC pain, I would love to hear your experiences. Did it help your IC symptoms? Please send me a private message here or on Facebook!
(See our database of medical care providers to see if someone is near you - http://www.ic-network.com/md/ or the International Pelvic Pain Society's physician directory - http://www.pelvicpain.org)
Creating a personalized treatment protocol
I think it’s important to create a treatment program that is customized to each individual patients needs. There is one diagnostic protocol that I think is exceptional in creating customized treatment plans... it's called the UPOINT system (http://www.upointmd.com).
It assesses patients six different ways including: bladder symptoms, bladder wall damage (if any), the presence of infection (if any), the presence of other neurologically related conditions such as IBS, the presence of pelvic floor tension and the presence of anxiety disorders. Depending upon what findings are found in the patient, they then recommend treating EACH area separately. If muscle tension is present, then muscle therapy is recommended but NOT at the EXCLUSION of other therapies as well. We've written about it several times on our website since it was released a few years ago.
Ultimately you, the pain patient, are the captain of your ship. You live in your body. You feel the subtle or extreme ebbs and flows of pain and discomfort. Yes, it’s frightening. You may also have an intuitive sense of what could be contributing or causing your pain. To reduce that anxiety and create a plan of action, try to break it into simple, more manageable steps and/or items that you can rule out. Talk to your obgyn about your estrogen levels. Ask for a pelvic floor assessment. If PFD is found, seek out and work with a physical therapist. Share any puzzling symptoms that you have. Ask your urologist about the health of your bladder wall. Are there therapies that you haven’t tried that could be used, such as laser therapy for a Hunner’s Ulcer.
And if you’re struggling with pain, asking for pain relief in the form of medication is reasonable. Pelvic pain, particularly IC pain, can be extreme and has been compared to the pain experienced by patients with cancer. They deserve compassionate treatment and so do IC patients. Remember, if you’re using pain medication to fulfill your responsibilities under the supervision of a physician, then you’re using it wisely but if you’re using medication to get high and escape your life, then you’re not. Talk with your doctor about it.
I’ve been asked for several years now to provide my opinion about the Wise-Anderson protocol and now you have it. This is, indeed, a very controversial topic and I expect that I will receive both love and hate mail over what I've said here.
Any and all comments should be directed to me via private message in this forum or on Facebook.
Jill Osborne
The Mystery of Pelvic Pain
When a patient has pelvic pain, particularly chronic pelvic pain, it's normal to be confused and anxious. You know you hurt "there"... but, darn it, where is "there?" The pelvic cavity is filled with organs (the bladder, bowel, reproductive tract), muscles (pelvic floor), nerves and blood vessels. So when you point to your pubic area, what are you pointing at? That, of course, is the question that haunts both patients and providers.
My approach to pain is to treat it like a mystery that needs to be solved. What is it? Where is it?? Why?? How should I treat it? And, generally, this is what physicians provide to patients. As they talk with you, take your history, and listen to your symptoms, they are trying to visualize what the problem could be and where.
So, for example, if your pain worsens after drinking coffees or sodas, then that is a clue that your pain could be originating from your bladder wall. If your pain fluctuates with your hormones, then perhaps they might look at the reproductive tract as well as the bladder. If your pain has an electrical, searing quality to it that occurs when you sit down but improves when you lay down or stand, then your physician may start exploring pudendal neuralgia and other conditions that change with the position of your body. If your pain is external, they may be looking at vulvodynia. The list and potential diagnoses is long and large.
A physician or clinic can be biased towards specific treatments
But, what patients may not understand is that many doctors, physical therapists and psychologists have specific beliefs or biases that sometimes get in the way. It’s painfully obvious to patients who have visited several doctors who frequently have conflicting suggestions and diagnoses. Some doctors like and believe in specific treatments (i.e. like those who prescribe elmiron to everyone), while others prefer bladder instillations or nerve stimulation. Some urologists assess for pelvic floor dysfunction and recommend treatment, while others never examine or consider the role of the pelvic floor. Ironically, we also know that some gynecologists fail to rule out the bladder as a potential source of recurring pain thus leading to tragic and completely unnecessary hysterectomies for many IC patients.
God forbid you mention an unusually puzzling symptom as I did last year when I experienced a weird "buzzing" sensation near my tail bone. I can just picture the look of incredulity on my primary care doctors face as he read my email as I tried to describe it. My questions to him were simple and logical. I have this symptom. It occurs after I sit for more than a few hours. Could it be the muscles or the nerves? He, thankfully, was equally intrigued but it took visits to my PCP, my ob-gyn, an orthopedic surgeon and a physical therapist before we confirmed that it really was a partially compressed pudendal nerve FROM sitting too long at this computer. (This is why I sit on a balance ball now for half the day).
I think that you and I deserve more than just a guess from a medical care provider as we are trying to get to the bottom of our pain. I like facts and specifics. I want to know what I have and, most importantly, how I should treat it. This takes work and time. You have to observe your pain, take notes about it and, yes, be willing to talk about each and every embarrassing aspect to it. Does it hurt when you have sex? Tell them!
You have to be prepared to talk with several doctors, at a minimum your regular physician, a urologist and, for women, an obgyn. These examinations are a vital part of discovering where your pain can be coming from. And if you’re not responding to treatment, whatever they recommend, you have to be prepared to go back and say “I am not where I need to be. What other options are available? Could we have missed anything?”
Here’s a true patient story. A man was diagnosed with IC and tried every therapy available. For five years he had no progress. He called me frequently as we tried to cover all potential bases... and then one day, he said something to me that he had never said before. He said “Jill. I feel great when I wake up with no pain at all. I don’t start hurting until I sit down for breakfast.” I said “Wow, you’ve never said that before. Have you told your doctors that?” He said “No.” This was a critical piece of information and to make a long story short, he didn’t have IC and now we know why his treatments didn’t work. He had a pudendal nerve entrapment, the primary symptom of which is pain, sharp nerve pain, when you sit down.
Yes, it takes time. Yes, the road is long with many curves. It takes work to figure out how and why pelvic pain occurs. And it takes even more work as you try treatments... and work you must. It’s also vital that you read some books and educate yourself, read new articles about IC and/or pelvic pain on the web, to talk to other patients and compare notes. Look for success stories but don't get taken in my promises of false cures. If you don't know where your pain is coming from, then how can a company selling a pill know where your pain is coming from?
Thoughts on the "Wise-Anderson Clinics For Pelvic Pain"
So, I’m writing this blog to address a question that I’ve received numerous times about pelvic pain programs, specifically the “Wise-Anderson” protocol that is also incorrectly referred to as the Stanford Protocol for pelvic pain. Made popular through a series books called A Headache in the Pelvis, they emphasize the use of “paradoxical relaxation” to reduce pain. Some ICN members have spent thousands of dollars participating in this six day clinic and have been disappointed with their results.
- Several patients thought that the program was affiliated with Stanford University and that Stanford personnel would be involved. This program is not affiliated with Stanford and is run by a psychologist licensed in California and is located in a hotel.
- For the money spent, one participant felt that the program was extremely casual and informal. They expected to work with medical care providers in professional attire.
- One patient felt that she had attended a very expensive “relaxation workshop” and that it was not beneficial for her IC.
- That the Amazon review system for the book has removed reviews which were critical of the book and/or clinic and that various websites have struggled with aggressive, hostile postings. I know that this happened because it's happened on our site as well.
On the other hand, the Wise-Anderson protocol has had several published research studies in credible urology journals and at the American Urology Association showing some success.
I am conflicted. I believe in evidence based medicine and formal research studies are meaningful. But I find myself appalled that patients are being charged thousands of dollars to, for the majority of their time there, learn relaxation skills. I think $500 is a reasonable fee that is still far too high for most patients. Paying several thousand dollars seems unusually high and personally, I can’t afford that nor do I think that most other patients can, particularly when there are so many regional and local pelvic pain physicians, physical therapists and psychologists across the country who can provide care and support without the burden of traveling and paying hotel fees, etc. I would encourage the program developers to be sensitive to the needs of patients who simply lack those resources by developing some free videos that can walk them through some of the basic principles.
I do believe that patients with consistent pelvic floor muscle tension can benefit from muscle relaxation therapy but I do not believe that relaxation therapy can address the fundamental physiological problems found in patients with Hunner’s Ulcers or pudendal nerve entrapments.
If you have gone through this program for your IC pain, I would love to hear your experiences. Did it help your IC symptoms? Please send me a private message here or on Facebook!
(See our database of medical care providers to see if someone is near you - http://www.ic-network.com/md/ or the International Pelvic Pain Society's physician directory - http://www.pelvicpain.org)
Creating a personalized treatment protocol
I think it’s important to create a treatment program that is customized to each individual patients needs. There is one diagnostic protocol that I think is exceptional in creating customized treatment plans... it's called the UPOINT system (http://www.upointmd.com).
It assesses patients six different ways including: bladder symptoms, bladder wall damage (if any), the presence of infection (if any), the presence of other neurologically related conditions such as IBS, the presence of pelvic floor tension and the presence of anxiety disorders. Depending upon what findings are found in the patient, they then recommend treating EACH area separately. If muscle tension is present, then muscle therapy is recommended but NOT at the EXCLUSION of other therapies as well. We've written about it several times on our website since it was released a few years ago.
Ultimately you, the pain patient, are the captain of your ship. You live in your body. You feel the subtle or extreme ebbs and flows of pain and discomfort. Yes, it’s frightening. You may also have an intuitive sense of what could be contributing or causing your pain. To reduce that anxiety and create a plan of action, try to break it into simple, more manageable steps and/or items that you can rule out. Talk to your obgyn about your estrogen levels. Ask for a pelvic floor assessment. If PFD is found, seek out and work with a physical therapist. Share any puzzling symptoms that you have. Ask your urologist about the health of your bladder wall. Are there therapies that you haven’t tried that could be used, such as laser therapy for a Hunner’s Ulcer.
And if you’re struggling with pain, asking for pain relief in the form of medication is reasonable. Pelvic pain, particularly IC pain, can be extreme and has been compared to the pain experienced by patients with cancer. They deserve compassionate treatment and so do IC patients. Remember, if you’re using pain medication to fulfill your responsibilities under the supervision of a physician, then you’re using it wisely but if you’re using medication to get high and escape your life, then you’re not. Talk with your doctor about it.
I’ve been asked for several years now to provide my opinion about the Wise-Anderson protocol and now you have it. This is, indeed, a very controversial topic and I expect that I will receive both love and hate mail over what I've said here.
Any and all comments should be directed to me via private message in this forum or on Facebook.
Jill Osborne
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