PNA 2015 Patient Conference

[Karyn]

From the Pudendal Neuralgia Association:

Dear Members,

We are in the beginning stages of planning a Patient Conference. We would like to know how many of you will be seriously interested in attending so that we may have an idea of what type of venue and how many participants we need to plan for.

We are considering Friday, September 25, 2015 in Baltimore, Maryland. This will be an all day conference from 8:00 AM to 7:00 PM US Eastern Time including breaks, lunch and dinner. Some of the topics will be Overview of PN, Non-Surgical Treatments, Nerve Blocks and Ablations, MRN, Neuromodulation, Complementary Alternative Treatments, Physical Therapy, and Surgical Treatments.

Once we have an idea of how many patients are seriously interested in attending, we will continue planning to make this event worthy of your time an effort.

Please let me know if this is something that you will consider. I do not know what the cost will be but we are trying to keep the cost between $100-$150 with the possibility of offering a few partial or complete scholarships.

Your input is very important in our decision to move forward.

I would also like to invite you to visit our webpage especially the resources, events and social media sites. http://pudendalassociation.org/

Thank you for your time and consideration.

Wishing you health,
Dahri

[nyt]

Thank you so much for putting together something like this.

A discussion on the mechanism(s) of pain which would include where in the spinal cord and brain is pain perceived. What is central sensitization, how can it be prevented, once you have it how is it recognized and treatment options. How do the different medication works to decrease or stop pain.

How to manage constipation or if some have the opposite problem. Urinary urgency and hyperarousal.

Under alternatives what about the role of diet. I read an interesting book called "Minding My Mitochondria" by Dr. Wahls. She is a physician with MS that had progressed to secondary stage but reversed many of her problems with diet and functional medicine. She has some interesting information in her book how to decrease pain with the food we eat. She might be an interesting one to have to discuss diet if she could just focus on it from the pain perspective and not the MS side of things. I know some of the doctors that specialize in CRPS/RSD are asking their patients to try a gluten free diet for a while as some patients find it decreases their pain.

With all the discussion on the board about mind-body connection I think it would be of great interest to this group to have someone discuss the technique Ezer found so helpful.

Instead of regular seats we should have commodes .

[ezer]

I agree nyt. There are 3 pelvic pain mindbody coaches I am aware of in the US:
Lorraine Faehndrich, Gail Kenny, and Abigail Steidley.

They all suffered from pelvic pain. I never met them but I found Abigail's ebook in particular enlightening --her ebook was key to my complete recovery from PN.

[nyt]

Another subject might be toolkit for living with pain. Jill Harkavy-Friedman,PhD, American Foundation for Suicide Prevention recently gave a talk for individuals with RSD and addresses issue on depression, recognizing suicide, etc.

[clm]

I would like to attend the conference as a post-PN-release surgery-2009 patient; re-injured 2010. Please add me to the attendee list. I am of course interested in all areas of chronic PN and SI joint pain-relief: imaging of and testing for damaged areas; surgical and non-surgical repair and maintenance; safe physical fitness, and anything that would help. Thank you. Clm

[Ray P.]

I wish I was able to travel to attend. I find it kind of ironic that you would expect people
with this condition to be able to travel and sit and stand all day for the conference.
I sure could not do it.

I guess some people are not in that bad of shape????????????????

ray

[Karyn]

Hi Everyone,

I would like to clarify that I am not involved with organizing the conference. I just shared this information from the Pudendal Neuralgia Association.
If anyone is interested in attending, or has comments please direct them to:
http://www.pudendalassociation.org

I find it kind of ironic that you would expect peoplewith this condition to be able to travel and sit and stand all day for the conference.

I agree. It is my understanding the Association is trying to work out something to accommodate patients so they are as comfortable as possible. I don't know what that
something is, yet.

[nyt]

Hi Ray,

That was my first thought was how could I ever do a full day conference, impossible. That is one of the reasons I did not attend last year, just too much in one day plus the travel. I figure if I try to attend this year that I will only attend part of the conference.

[Violet M]

I think the conference was geared primarily toward healthcare professionals(especially physicians) since continuing medical education units were offered for physicians. If we all tell our physicians about the conference, maybe it will eventually grow to attract more physicians from all over the country and even internationally.

Violet

[nyt]

Violet, I guess my confusion came when I went to the Pudendal Neuralgia Association website because when I read the "About Us/Contact Us" the goals are focused towards patients and not physicians. I did know the 2014 conference allowed physicians to get CME credits. Thanks for the clarification.