My Experience at Stanford Clinic, CA - October 2007

[Sunny]

I attended Stanford Clinic in Sebastopol, CA from 18-22 October.

My symptoms: I have been having pelvic pain symptoms since Dec 2006 but more intense from March 2007. I have pain in my glutes and outer thighs when I sit for more than 1-2 hours, also some burning during urination and some groin pain. Fortunately I dont have frequency or urgency problem that most people have. I have tried a PT in my home town for 3 months but it did not improve situation significantly. So I decided in September to attend October clinic.

Clinic details:
Thursday (18): Landed in SFO on Thursday and had urological evaluation in Sonoma.
Friday (19): I had evaluation done by Tim (PT) for an hour. He found several trigger points that my earlier PT or me did not know. Lot of TP in Abdomin and Adductors externally and in Levator Ani Anterior muscle internally. On the scale of intensity of pain, he rated me around 4-5 out of 10. We did not have 9 or 10 in our batch. 7 was the highest. I knew of my ext TP in Qudratum Lumborum and Glutes already Dr Wise went through basics of relaxation, RSA breathing that day and Sara showed how to do stretches and what are relevant for my TP. Tim showed how the int TP in levator Ani are causing burning in my urethra. By end of clinic my burning went down 80-90% and I stopped Flomax at end of clinic and I did not have to restart in last 10 days
Saturday: We had 3-4 sessions of relaxations sessions. For me it was difficult to focus on sensations. Dr Wise told every body that you need to practice 3 months before expecting big improvement from relaxations. Had an hour of PT by Tim and session with Sara.
Sunday: Dr Wise talked about role of self treatment in recovering from Pelvic Pain. Got some directions/tip on internal work for people who did not come with spouse /partner. 1 hour of PT by Tim . Sara had group exercise class for 1.5-2 hours and 4 relaxations sessions by Dr Wise.
Monday: Dr Wise had group walk with everybody in class and told on how to do relaxation while walking technique and also discussed on why it is important to avoid catastrophic thinking if you want to recover faster. Suggested reading of "Loving what is" by Byron Katie.



We have seen video on how the electrical activity on TP will go down with relaxation which is done through EMG test.
Tuesday: last day of class and was long day from 9 am -8 pm with dinner served. Dr Wise talked about healing power of body. Talked on how to treat/deal with pain for bowel movement or after/during sex. Had 4 relaxation session that day. Talked about IBS, Anal Fissures. Had grand dinner at end. There was improvement in everybody's symptoms and everybody looked confident on how to fight this beast. We all could see light at end of tunnel which is important psychologically for healing to happen faster. I did not have much flare ups during clinic probably because I was not at higher end of pain scale.

I am trying to keep up with protocol. It is taking lot of time but I am sure it will pay off. 30 min of relaxation in morning and 1 hour for ext TP treatment/stretches in morning. Same thing in evening and additional 15-20 min for internal TP treatment. Dr Wise suggested at least 30 min of aerobic exercise to calm down nervous system but I am having hard time to find time for that. At least 3 hours per day. 4-5 hours for complete routine to the dot.

About group: we had 14 people in our group. There were patients from Kenya, UK, Canada and Virgin Islands. 10 were male and 4 were female. 7 had partners with them and 7 without (i was one of them). We created internet group and trying to share our lessons/success stories and stay in touch.

Logistics: Cost of the class is $3500 . $2600 approximately for Dr Wise and rest for Tim/Sara. There are very nice hotels in Sebastopol and Occidental but all of them cost > 100$ per day. I found decent extended stay hotel in Santa Rosa (15miles from clinic) for 40$ through hot wire. Take GPS on the car since directions are not clear on country roads. Lunch is served everyday at clinic.

I would strongly recommend going to this clinic if you have tried every thing available to you already. Make sure you read the book "headache in the pelvis" before you go there so you know what to expect.

This forum helped me find the information on this protocol and convinced me that it is worth the money and effort. I want to contribute back by giving detailed explanation of my experience at clinic to help future attendees and prospects.


hope this helps

Sunny

[kevin]

thanks for sharing your experience!

[rider fan]

Talked on how to treat/deal with pain for bowel movement or after/during sex. Had 4 relaxation session that day. Talked about IBS, Anal Fissures.

Great post Sunny. I know I'm cheating here, but what did he say about pain after bowel movements? I'm not having pain, but lately bm's are setting off muscle spasms for me that can last all day (not painful but annoying and concerning). Thanks!

RF

[Sunny]

RF:

It is not secret. Most of the info I posted is already in Dr Wise's book "Headache in Pelvis". He suggested that we can stretching external and internal anal sphincter with gloved finger and with use of lubrication. This should be minimize the pain after bowel movement and sex too. Somebody in the class was joking that they need to take glove and lubricant in addition to condom whenever they go on a date

This may have been explained in HITP book too.

Sunny

[Sunny]

I forgot to mention couple of comments in my earlier post.

1) Dr Wise said his personal experience of suffering 19 years with pelvic pain and experience of conducting clinics, that he does not think medicines will play big role in healing. They should be taken for temporary relief from pain but not for long term cure. He said this when I asked him about Elavil, neurontin, any accredited quercetin product and other vitamin supplements like Ester C, Magnesium etc.

2) My personal improvement after the clinic was 30-35% approximately. Some people at higher pain threshold has more improvement.

3) About the time I mentioned to follow SP at home. I dont expect I need to spend 3-4 hours every day for long term. I think in 3 months I should have significant improvement, then doing one relaxation and one TP and stretch session would be enough. After 1 year I am expecting it will be done only on need basis when having flare ups or stress in life.

Sunny

[rider fan]

Thank you Sunny.

[Sunny]

Here are some other relevant info regarding my experience at Clinic. I got some private messages asking contact information of Dr.Wise etc.

1) URL for Dr.Wise clinic is: http://www.pelvicpainhelp.com/ and it is in town "Sebastopol" which is about 60-70 miles north of San Francisco. The famous NAPA valley where they make lot of wine is very near to this place and you will find lot of vineyards on the way to Sebastopl from Santa Rosa. Wine lovers can plan in advance to taste different kind of vines. The clinic is in retreat kind of place which is surrounded by tall redwoods and is in hilly area. This protocol is available as treatment for last 4 years and our clinic was 48th one.

2) Skin Rolling: We were told this is very important tool for reducing pain in abdomen and inner/outer thighs. The technique is explained in "HITP" book and also Claire Davies's book "Trigger Point Manual". I am able to do it 2 times a day but recommended to as many times as you can. When I was clinic my abdomen area was so sensitive, now pain gone down significantly. For men, TP in abdomen area will result in groin and testicle pain.

3) Trigger Point Manual: We were all recommended to buy Davies's book to understand and treat Trigger points. It costs around $15 on Amazon and definitely worth the money.

4) Moment to Moment Relaxation: This is explained in the book too (A HEADACHE IN THE PELVIS). It will benefit tremendously if we can practice this during course of day. This is some thing I am not doing that well. I bought a watch (vibralite 3) which would beep every 30 min to remind me but I need to put more effort.

5) Foam Roll: Sara showed us how we can use foam roll to give message to thighs and lower back. We can use the foam roll to message, front part of thighs, back side of thighs and outer side (right side) of thighs. You can use this to message glutes (buttocks) and lower back also. I bought mine at Target for $25. But you may find it cheaper in some sports store.

6) Other tools: Theracane is recommended for treating trigger points in abdomen. Tennis ball for Glutes, Quadratus Lumborum and perineum. Knobber for Adductors. I bought Theracane on amazon and they will sell instructional DVD for $5. They will give Theracane to every body who takes the class. But of course, everybody need to find what ever tool you are comfortable for your own treatment.

7) Registering for class: They take around 15 people per each class and schedule is published on the web site. You need to book 2 months in advance (recommended) so that you have enough time to make all the arrangements. The people who book early can have PT evaluation on Thursday and they can attend relaxation session uninterrupted on Friday. You should take advantage of Flex plan at work (if you have it) so that you can save 20-30% portion of fees by saving taxes. Most insurances dont pay for this treatment and you need to pay in full before you start treatment. They dont process insurance but they will give voucher/bill if you want file for insurance.

8) Journal: In the book (A HEADACHE IN THE PELVIS), it is recommended that you maintain journal about how your relaxations are going and track your progress. I am trying to maintain journal on my own practice of protocol at home for relaxations, TP treatment, stretches, how I felt that day, any flare ups etc so that it is easy to figure out for me what works and what does not when you look back.

If there is any thing else I can think of, I will add it later.

Sunny

[garyholc]

Sunny, out of interest where there many people there who had frequent urination feelings/problems and do you know if much was said about this at the clinic or if these people were helped?

[Sunny]

garyholc:

Frequency and Urgency are standard problems for most (> 90%) of pelvic pain sufferers. Probably I was the only one who did not have this problem out of 14 people at the clinic.

They had 2 bath rooms at clinic and there was always long line during the break because every body had to go to bathroom I hear one dude saying that he had to pee every hour before and at end of class , the period went upto 2 hours.

You can also read the A HEADACHE IN THE PELVIS book and several TP in Levator Ani (internally) will cause those things. Since it was not one of my issue, I did not capture much info on it. I am sure there are other people in the forum with those issues and attended clinic

Sunny

[alprost]

Great report Sunny, thanks for taking the time to post this. Glad to hear the trip went well and that Tim ID'd all of your TPs.

That's excellent that your symptoms have improved so much after the clinic.

The one thing I've learned - and that I didn't take on board immediately after the Clinic I attended - is that I needed to fully commit to all aspects of the programme (PT; 1hr a day of relaxation; moment to moment relaxation & stretching etc.) to reap maximum benefits.