has anyone attended a 6 day stanford clinic??

[jena55]

I was just curious if anyone has attended the 6 days clinics discussed in the book 'A Headache in the Pelvis'. If so, I would love to hear about it and whether you thought it was worth it. I am sure it is unbelievably expensive, but I am exploring all options at this point.

Thanks,
Jena

[icnmgrjill]

It's been a long time since I've talked with anyone who went through it. The feedback was generally positive though almost everyone said it was very VERY expensive.

Jill

[musiclover]

I called about it. The 6 days cost about $5,000. I am currently doing PT and next month finally get in with a doctor who is a pelvic floor specialist, so I'm trying that first. I got the Headache in the Pelvis book. I started improving but had a recent setback after joining a gym. I have frequency 24/7 again. So annoying. I don't have IC just PFD. It's really been a pain.

[Krisssy]

I was just recommended to a place on Long Island who does the Stanford Protocal. I will call tomorrow to see if they take insurance unlike the place in Stanford. I, also, have been diagnosed with PFD without IC. Krisssy

[KWinTO]

Hi,
I'm attending the 6-day clinic in August. I'm hopeful that I'll see some results and maybe gain a better understanding of what's going on 'down there.' I'll definitely let you know how it goes.
K

[musiclover]

Yes, keep us updated. I'm sure you will learn a lot.

[Krisssy]

I just began PT on Long Island with a woman who trained with Dr. Wise of the Stanford Protocal. Her practice is only for the pelvis-nothing else. I have PFD without IC. She was so amazing. The first session was supposed to be for 2 hours and ended up being for 3 1/2. She only charged for the two hours. I can't begin to explain how wonderful it was. She spent two hours talking to me about my history and 1 1/2 hours examining me. She was able to feel exactly where my surgical adhsions were during the external exam. During the internal exam, she touched a muscle, and I screamed and cried. She said she was not at all surprised, because that muscle touches the nerve that goes directly to the vaginal and CLITOAL AREAS-MY PAIN AREAS. Then she started to ask me what I was thinking of at the moment I felt the pain. Like with the book, "A Headache in the Pelvis" I was thinking of a trauma happening to me as a teenager. Before I told her that, she told me that this tightening thing started at age 18. She knew this before I told her what happended at age 18. At age 18, I was admitted to the hospital for what they now call irritable Bowel Syndrome. She said it is all the same. She gave me homework to do and a tape to listen to , but not too much for the first time-just enough. My husband stayed in the room as she examined me, because I wanted it that way. If I didn't want to be examined internally, that would have been fine too. She doesn't push you to do anything that you are not comfortable with. As we were leaving this woman was entering. She told me that three years ago, she had tried every doc and PT in this country. No one helped until she met this therapist. Now she only comes once in a while when something triggers her. She said once you have this problem, many things can trigger the muscle nerve pain snyndrome to start up again whether it be surgery, an epidural, exercising or whatever. I had this triggered by something 18 yrs. ago and it eventually went away. A year ago, it was triggered off by one of quite a few things including yoga, tread mill, allergic skin rash where I had to drink gallons of water and then a colonoscopy where I had to drink more water. It could also have been triggered by my surgical adhesions. She is kind and caring but very serious about helping you. I have a very positive feeling abut this, and I cannot wait to go back next week. My last PT was a dread to go to. I hated it, and I hated her. This was the exact opposite feeling. My husband is so hopeful that he doesn't mind paying-no insurance just like the Stanford Protocal. She told me that we will probably go together to Dr. Robert Moldwin, my urologist, to show him where triggerpoint is and ask him to inject it. I will keep in touch and let you all know how this works. She also has a 6 day workshop for out of towners. I don't know how much it is. If anyone wants information, PM me. Krisssy PS She is mentioned in the book, " A Headache in the Pelvis." She told me that there are differences, but she uses a lot of what she learned trainiog there.

[purpleviolet]

I was visiting the east coast and was going to see a friend on Long Island and so I made one appointment with her and it ran over - she really connected with me and so I came back for another hour with my husband. She tried to show him what to do in that short time - She is incredible. I just hope that if I do what she told me to do that it will help because the guy who wrote the "headache in the pelvis" book I think had more PFD than IC because he wasn't affected by what he ate or drank. So I am sure her technique would help people whose pain is mostly caused by tight muscles and trigger points. She was more aggressive and compassionate than any PT I've been to. They were always afraid of pushing on the bladder and internally stetched toward the rear of the vagina (because they were afraid of hurting me) where as she just dug right in saying I have to have the urethra more moveable. It did hurt but it is possible that she is right - time will tell - I am going to try to do what she wants me to do which is to soften up everything. I'm a little confused though, because her CD is I don't think is as extensive as the Stanford Protocol. PV

[ICsmiles]

I attended the 6 day pelvic pain clinic described in the Headache in the Pelvis book.
i would be happy to share my experience. i just finished writing a very long post about it and lost it when I tried to submit it@!!

So I will try to re-write it later.

In the meantime, feel free to send me a private message and I will be happy to email or call you and talk about it.

I know when I went I really wanted to ask others who had been what it was like, but could not find anyone. So if I can help someone, I would be very happy to do so. :hi:

[purpleviolet]

ICsmiles
So sorry you lost your post, but I don't want to bother you with PMs so anything you post to us all I'm sure could explain a great deal - positive or negative. I really would like to know how the protocol works with female IC'ers and if it can substantially cure the bladder including healing the lining which so many believe is the cause of the pelvic tightening. But maybe it is a self-feeding loop.
I have certain issues about the unwillingness of the stanford clinic to release the tapes. I don't "buy" the part about they don't think it would help anyone unless they go to their clinic. After all there are millions probably with prostatis or IC or pelvic pain and they all can't go to their clinic and perhaps the tapes would help some people in some way... Furthermore there are other pelvic therapists who probably can help patients identify and learn to release trigger points themselves and most likely would help their patients in following the protocol as described in the book if that is what a patient would want to do. So I am wondering if their book is not a big "ad" for themselves even though the actual clinic might be wonderful. Your thoughts? PV

[Puppybreath]

I attended David Wise' clinic in Sonoma three years ago.
It was great.
He worked with a Stanford Urologist to develop the program and requires that you see a urologist to confirm the diagnosis before you do his program.


I have never heard that Stanford has taken any action against him so I have no evidence that he is a charlatan. His work with the Stanford urologist was many years ago. He cured his own pelvic pain by trial and error. He says that Tim Sawyer, the physical therapist is a really amazing healer and I have to agree. I think the right thing to do is to call him if you have any questions about that. I found him quite accessible, as was his staff.

I was on medical staff at a large hospital in Miami and I sent copies to all the docs I knew that I thought might be interested. That's how much I believed in the program.

You can't blame the guy for not wanting to sell his own tapes. Many programs are like that. They believe the whole is bigger than the sum of its parts...besides that, the really great part is the physical therapy and stretching that you learn from Tim Sawyer and his staff.
The tapes are a waste without it. I respect that as his right. It certainly isn't a reason to devalue the program. He does processing sessions after each tape to deal with emotional reactions and problems with becoming relaxed so it just would not be the same to listen to it.

I just heard from someone who took the workshop in Santa Rosa last month after writing me. She was thrilled and felt that the hotel was a great setting

As you can read from the majority of the responses, a lot of people are very happy. I did not meet anyone who felt it was a waste of time. It is a great reminder to do what we can for ourselves. It does not exclude any other kind of treatment. I drastically changed what I was were doing.

The approach is really interesting. Tim maps trigger points, internally and externally and teaches you how to release them. Spouses and signiicant others are invited to come and help the patient with the physical therapy. That is really a great asset for people with willing spouses. One couple came from Paris. There was a young Australian and another young man from London. You get to hear what other people have gone through and you learn from how the Wise program has dealt with lots of people just like you.

I was thinking I would be the youngest one (51) and I think there were two women older than me. There were a lot of young men struggling with "non-bacterial prostatis," which is treated with antibiotics...go figure.

They give you a theracane and make a very brief attempt to teach you relaxation, that why they do the tapes. I would say that the tapes are maybe 10% of the program. If you bought them you would only be disappointed. It is almost entirely experiential.

I got great relief and never got past the 8th tape. It allowed me to stop all those miserable DMSO treatments and pee meds. I have steady relief as long as I do the physical therapy work they taught me. I have added to that a massage therapist who specializes in trigger points. I think I will always have a high maintenance body.

You can make a lot of progress just by following instructions in the book.
My massage therapist saw a difference in me after I did the internal releases one time. My low back released and was flat on the table after one attempt to do the internal trigger points...I think that says a lot.

We will never know how much of IC pain is pelvic muscle problems and how much is IC itself. I had the burning and frequency. I have less frequency when I do the protocol. I have no burning and the only thing I have to avoid is pepper or peppers. They kill me almost immediately.

You are welcome to write me personally if you have any questions.
From my own background as a psychologist I can only say that I took a lot of the program back and shared it with my patients. This is just my opinion (and it is worth what you paid for it), but I would recommend it very highly.

We each have to decide for ourselves. I am really glad I went and I can only wish that all of us could have this opportunity to try it without the travel and expense. I hope one day all physical therapists work this way.

Beth