Health Organization for Pudendal Education

LottaNerve wrote:That's a shame that Dave was cut out of the forum. When I read back over the posts, it sounded more like he was responding to questions posed to him, not advertising. It was only when he was asked several times and specifically how to go about doing what he did, that he revealed he had started teaching it.
I thought there was a process for situations like this, with the first step being a warning and either deleting the comment or allowing the person to edit it?
Respectfully,
Sharon aka LottaNerve

ezer wrote:I don't see why DaveM's practice could not be listed as a resource on the home page under providers. You could also list mindbody experts like Abigail Steidley or lorraine Faehndrich. We have now 3 or 4 patients including myself that have recovered using alternative methods for healing (I personally know more people than that but they are not on this forum). I think it deserves some place next to surgery with its ahem... not so great outcome.

We show utter deference to and list some PNE doctors whose track record of success are nil as far as I can tell on this forum.
You don't want to be seen as the "Pudendal surgery site" which I am afraid is how pudendalhope is perceived because most of the advisers are pudendal surgeons.

Pudendal nerve entrapment is not exactly a diagnosis devoid of controversy within the allopathic medical community itself. It is as controversial if not more than some alternative theories:

http://www.ncbi.nlm.nih.gov/pubmed/19238769
Pudendal neuralgia. Fact or fiction?

I don't know what Dave's intentions or ethics are but he agreed not to advertise before he posted. Also in the terms of use members agree not to advertise. So is he allowed to use the forum to get his foot in the door and then start advertising via private message? If people advertise via private message you can't exactly ask someone to edit a private message after the fact.

We are a non-profit organization and we have certain agreements with the government on what we can and can't do to maintain our tax exempt status. In our agreement with the government to have tax exempt status, we are allowed to list healthcare providers as long as we don't endorse them, but our listings are limited to providers who are licensed which means there is some government oversight in assuring that they have a certain amount of training to have gained and maintained that license. When providers are licensed, we can check their licenses for complaints, etc.

If there are mindbody therapists who are licensed psychologists or pscychiatrists I think that would fall within our guidelines of licensed providers. Doctors of oriental medicine or chiropractors would also fall into the category of being licensed. But I think we are walking on shaky ground if we allow listings of unlicensed providers.

So for all of you who are criticizing the actions of the moderators/directors, I have several questions for you.

1. Should we just let anyone and everyone come on the forum and advertise whatever they want to and send PM's advertising to all of the forum members?
2. Do you all want to be receiving PM's with advertisements from all kinds of people who want to sell things?
3. If we allow one, we have to allow all. Or else we have to sort through who we do and don't allow and we could be opening up a huge can of worms if we do that. For those who want us to allow non-licensed providers, who of you would like to help us sort out who is legitimate or not, what we allow and what we don't?
4. How many hours a week would you like to spend helping to figure out who is legitimate and who isn't?
5. Would you like to help out and become a director or moderator, including sorting through all of the emails in the admin box from people who want to advertise on the forum and sorting through all of the posts that are made? We could use more help around here.
6. If we change the advertising policy and our bylaws and our agreement with the IRS, who wants to help be a director and come up with new bylaws, new advertising policy, new terms of agreement, and new agreement with the IRS? How much time would you like to spend doing that?
7. How much would you like to pay an attorney to change all of that?

Ezer, you have suggested adding some new practitioners/providers to the website. As a director you were invited to do so. You are still welcome to do so. When would you like to start? I would love to see more advisers who aren't physicians but someone has to take the time to invite them and post them on the website. I have a full time job and unfortunately, I don't have time to work on it right now. Lottanerve, if you want changes, you are also welcome to come back as a director and help out.

We have never prevented people from coming on the forum to say they were helped by this or that therapy -- alternative or otherwise, unlicensed or licensed. We have never prevented anyone from saying surgery, injections, PT, or whatever, didn't help them or made them worse. We have never prevented people from respectfully posting bad experiences with providers. We aren't trying to hide or promote anything here.

Violet

Ezer, you recently made the following two statements.

ezer wrote: I am 100% cured by mindbody practice. My success with it was phenomenal.

ezer wrote:

One last thing: You may think that I am experiencing a delayed cure from my surgeries. It is really not the case. If I have an emotional trigger, the PN pain can come back for a couple of hours. It is as bad as ever.

Could you please explain what your definition of cure is? Does it mean that if you have an emotional trigger and the PN pain comes back for a couple of hours as bad as ever that you are cured? What does 100% cured mean to you?

Thanks,

Violet

The IRS does not request tax-exempt 501(c)(3) organizations to only list licensed providers. If it was true, you should immediately de-list Pudendalhope advisers Dr. Gerard Amarenco, M.D., France, Dr. Eric Bautrant, M.D., France, Dr. Jacques Beco, M.D., Belgium, Dr. Tibet Erdogru, M.D., Turkey, Dr. Gareth Greenslade, M.D., UK, Dr. Marc Possover, M.D., Switzerland, and Dr. Thierry Vancaillie, M.D., Australia. None of those physicians hold licenses valid in the US.

Could you please explain what your definition of cure is? Does it mean that if you have an emotional trigger and the PN pain comes back for a couple of hours as bad as ever that you are cured? What does 100% cured mean to you?

Violet, you are nit-picking and being petty. I am absolutely pain free 99.4% of the time (to be exact). The last time I experienced pain was 2 weeks ago. A CHP stopped me and accused me of texting. I wasn't. I was simply listing the directions on my dashboard GPS. He was extremely rude but let me go with a warning. Yes, I was upset and the pain came back. It was gone 2 hours later after I experienced my emotions. I think that qualifies as cured.

But I get it. You simply don't believe me. The only real valid cure is via surgery.

I'm sorry the situation with Dave seems to have caused such upset and negativity. Just to clarify he PM me, I did not request this nor did I PM him first. The moderators that successfully and fairly regulate the forum contacted me, I did not put in a complaint and I stated openly and honestly that Dave's unrequested PM was a glossy website clearly showing him to be the trainer. My heart sank as it meant his advice and suggestions were not anecdotal and impartial as he had a vested financial interest. I have already spent in excess of £16,000 and still in chronic pain so please forgive my skepticism when it comes to yet more exorbitant prices with no real guarantee of a happy ending.
Personally without meaning to sound sycophantic I think the moderates work tirelessly to ensure the forum is properly regulated and I know I find it invaluable.
This condition is difficult enough to cope with and like you say emotional stress does contribute to pain so let's all work together for a pain free future !!

ezer wrote:The IRS does not request tax-exempt 501(c)(3) organizations to only list licensed providers. If it was true, you should immediately de-list Pudendalhope advisers Dr. Gerard Amarenco, M.D., France, Dr. Eric Bautrant, M.D., France, Dr. Jacques Beco, M.D., Belgium, Dr. Tibet Erdogru, M.D., Turkey, Dr. Gareth Greenslade, M.D., UK, Dr. Marc Possover, M.D., Switzerland, and Dr. Thierry Vancaillie, M.D., Australia. None of those physicians hold licenses valid in the US.

This is an exact quote from part of my correspondence with the IRS when they sent us a list of very detailed tough questions that we had to answer in order to be approved.

IRS official: "What are the criteria for listing these individuals on your website?"

Our answer: "In order for a healthcare provider to be listed on our website they must be licensed.."

I can't say for sure why we responded the way way did other than to say that it seemed safer for patients to list providers who had to meet some sort of standard (licensure) than to just list anyone and everyone. This was a few years back when we didn't know as much about alternative treatments. I don't know if the IRS would have approved us listing unlicensed people or not. I'm just saying that currently what we are approved for is to list licensed providers and if we want to start listing providers who are not licensed, I think it would be wise to get approval from the IRS on new guidelines. The providers don't have to be in the US -- we are approved by the IRS to be an international organization. The non-US providers you mentioned are MD's. Do you think those countries require a license to be an MD?

ezer wrote:Violet, you are nit-picking and acting petty. I am absolutely pain free 99.4% of the time (to be exact). The last time I experienced pain was 2 weeks ago. A CHP stopped me and accused me of texting. I wasn't. I was simply listing the directions on my dashboard GPS. He was extremely rude but let me go with a warning. Yes, I was upset and the pain came back. It was gone 2 hours later after I experienced my emotions. I think that qualifies as cured.

But I get it. You simply don't believe me. The only real valid cure is via surgery.

I'm sorry, Ezer. Not trying to be picky or petty. Just trying to understand what you meant. Some people get confused when a member says they are cured but also says they are still having pain. I believe you when you say you are mostly pain-free. I have suggested to patients that they read your posts and try the mind-body approach.

Please tell me, where has anyone ever said on this forum that surgery is the only real vaild cure?

Violet

Violet, those are our criteria we presented to the IRS, not theirs they imposed.

But anyhow, the most astonishing thing about my thread on "Surgery Success rate" is that nobody disputed my 13.5% success rate I presented. Absolutely amazing. I think that as an organization that promotes surgery as a viable option, you should really discuss seriously with your distinguished "advisers" those numbers.

RayP, feel free to PM me if you have questions or if you want to exchange emails.

Positivepoppy wrote:I'm sorry the situation with Dave seems to have caused such upset and negativity. Just to clarify he PM me, I did not request this nor did I PM him first. The moderators that successfully and fairly regulate the forum contacted me, I did not put in a complaint and I stated openly and honestly that Dave's unrequested PM was a glossy website clearly showing him to be the trainer. My heart sank as it meant his advice and suggestions were not anecdotal and impartial as he had a vested financial interest. I have already spent in excess of £16,000 and still in chronic pain so please forgive my skepticism when it comes to yet more exorbitant prices with no real guarantee of a happy ending.!

Positivepoppy, I did contact you as you stated because you mentioned something on the forum about how sad you were about this person contacting you. I'm sorry about all of the money you have spent with no relief as yet. Obviously surgery is not a cure for everyone which is why we need to hear from everyone about what worked for them, including Ezer. All I want is for patients to get well and I do wish we could all work together peacefully.

Violet

ezer wrote:Violet, those are our criteria we presented to the IRS, not theirs they imposed.

Yes, that's what I said. We were required to come up with criteria and that is what the directors agreed to. If you have some better criteria, I would be happy to take it to the board of directors and if they approve it, we could ask the IRS to amend our guidelines.

ezer wrote:But anyhow, the most astonishing thing about my thread on "Surgery Success rate" is that nobody disputed my 13.5% success rate I presented. Absolutely amazing. I think that as an organization that promotes surgery as a viable option, you should really discuss seriously with your distinguished "advisers" those numbers.

I didn't really want to get into an argument so it seemed wise to let people vent about their unsuccessful surgeries. I don't dispute your numbers based on the patients you included in the statistics; however, the patients on this forum may not be a representative sample.

Yes, we can ask the PNE surgeons why the forum numbers don't agree with the published literature on success rates. I am trying to understand why you would not have suggested this to the HOPE directors when you were a director. I suspect we would have overwhelmingly approved the idea.

Violet

Hello friends
I am actually aware of 4 other women that had surgery on or around the same time as me (December 2013) that are "better". I wanted to let others know that surgery has come a long way from even a few years ago Dr H said. You can't just go in and demand surgery. These doctors are very picky about who they do surgery on now. My surgery was over 5 hours long for only one side. Dr Hibner wrapped my nerve in umbilical stem cells neurowrap.... Not sure if that's what has helped my recovery? I am doing so well. This week I have had most days all 0/10! I went Christmas shopping and out for lunch to celebrate my 1 year surgical TG anniversary.
Blessings to all.

blossum wrote:
Surgery worked for me and my dear online friends.

blossum, I wish you and your friends the very best recovery.
Did all your friends have mesh removal? If it is the case, I am not sure what to make of the data you presented. It may be a totally different problem than what I surveyed.
But in any case, I tried to present statistical data from people that had pudendal nerve surgery at least 2+ years ago. What you showed is still anecdotal I am afraid. If a patient reports significant improvements at the 2 year mark and has completely discontinued all pain medication, then I think we can consider surgery a success. It would be great if you and your friends could report your status in a year from now.

blossum wrote:
Dr H said. You can't just go in and demand surgery. These doctors are very picky about who they do surgery on now.

Does it mean that until now, surgery was offered pretty freely? That is not exactly a comforting thought.

positivepoppy wrote:
My heart sank as it meant his advice and suggestions were not anecdotal and impartial as he had a vested financial interest.

positivepoppy, I think you should direct your anger at the surgeons that sold you on pudendal nerve decompression surgery. So far they are the ones that helped themselves to your savings and not that RE instructor.
If you strongly feel that postural work will help you then by any means, go look at the 100s of web sites and youtube videos that cover the subject.
My mindbody recovery did not cost me a penny. I worked from a free ebook and online resources.

Violet M wrote:
I am trying to understand why you would not have suggested this to the HOPE directors when you were a director.

Violet, you know well what happened. Before surgery, I was desperate and ready to believe the 80% cure rate advertised by PN surgeons. After my failed surgeries, I still thought that about 30-40% of patients were made much better by surgery.
But as you know, in the last 6 months a few cured patients that we always looked up to as evidence surgery works eventually reported a relapse or we discovered that some of them were still pursuing various treatments.
That instilled a serious doubt in my mind. Then 2 months ago, you told me that in your opinion, 80% of people benefited from surgery which you said was in line with what surgeons are reporting.
I therefore unarchived my emails and started digging into them: I discovered that Only 13.5% of patients that corresponded with me during a period of 10 years were helped by pudendal surgery. That is a serious dissonance.