Secret Suffering Survey on Vulvar pain (please fill it out!)

[Guest guest]

The info below was sent to the Happy Pelvis group. I got permission to send post it to Vulvar disorders. Please go to the site http://www.secretsuffering.com to fill out the survey about vulvar pain and it's effects on you. Your partner can also do a survey, too. My husband and I both filled it out and it did not take long at all. Look at the top of the homepage and click on the 'survey' link. Many Hugs, Chelle IPPS = International Pelvic Pain Society Dear members of IPPS:I have been a member of IPPS for 3 years and have established over thepast 6 years a multi-disciplinary, multi-modal, and multi-organ systemprogram for CPP. I have been practicing OB/Gyn for over 35 years

andcaring for women (and now a few men) with CPP which has become one of themost gratifying experiences of my career. Our practice is growing rapidlyand we are hearing so many tragic stories of how CPP has affected thelives of these patients and how difficult it has been for them to findhelp (even after undergoing multiple invasive surgeries and testing bymultiple specialists).This past year I have teamed up with and am now collaborating with Bilheimer, a science writer from Boca Raton, Florida to write a book whichis now contracted with a major publisher which will be called "SecretSuffering" Our goal with the book and now also websitewww.secretsuffering.com is to raise the consciousness of the generalpublic to the prevalence of CPP, how it affects relationships, and howdifficult it is to find appropriate medical help. has already interviewed numerous women and men, as well as gained alarge

amount of info on an on-line survey over the past year, and is readyto complete the writing of the book. We would like to now turn to themembership of the IPPS to ask your help by either or both of 2 ways.1. Register (free) into our website www.secretsuffering.com and enter afew paragraphs in our "expert's corner" or2. Volunteer for a brief 15 minute interview by phone or E-mail to We are looking for 3 things from professionals in the CPP field:1. How and why you got into this field of CPP to begin with...2. Your overall observational commments on what you have seen regardingCPP and its effects on relationships3. Your overall impression of how difficult it is for patients with CPPto find help and why you believe this to be true.Please remember that we are not conducting any kind of scientific studyhere but wish to get comments from not only patients who have suffered butalso from as many true

experts in the field as possible. Some of you knowme already, but most of you do not. I am not an academician, but am fullydedicated to approaching the clinical aspects of assessment, listening,making specific diagnoses, and carrying out the best treatment plansranging from IC, IBS, Endometriosis, Vulvodynia, Vestibulodynia, High tonePelvic Floor Dysfunction, Neuropathic pain management, trigger pointtherapies, pudendal blocks, etc. Most of my colleagues here do not carefor chronic non-cyclic pain issues of the pelvis very well, avoidingsexual complaints, and they just don't have the time to spend on thesecomplex patients.However we are seeing very encouraging results in even the most difficultof cases. I strongly feel that training programs need to be establishedwithin our residencies regarding CPP and that each community have at leasta few practitioners involved in a multi-disciplinary CPP center.In the

meantime we think that our book may at least help the generalpublic begin to understand what CPP is, how it affects their daily lives,and hopefully how best to go about finding practitioners that can help.Your help and your experience could go a long way by just contributing afew minutes of your time. We would greatly appreciate it.Sincerely, J. Echenberg, MD623 W. Union Blvd. Suite 5Bethlehem, PA 18018Phone: Fax: Web sites: www.cpp.medem.com and www.secretsuffering.comE-mail: office@... or nancech1@... BilheimerE-mail: susan@...

[Guest guest]

>

> The info below was sent to the Happy Pelvis group. I got

permission to send post it to Vulvar disorders. Please go to the site

http://www.secretsuffering.com to fill out the survey about vulvar

pain and it's effects on you. Your partner can also do a survey, too.

My husband and I both filled it out and it did not take long at all.

Look at the top of the homepage and click on the 'survey' link. Many

Hugs, Chelle

>

>

>

> IPPS = International Pelvic Pain Society

>

> Dear members of IPPS:

>

> I have been a member of IPPS for 3 years and have established over the

> past 6 years a multi-disciplinary, multi-modal, and multi-organ system

> program for CPP. I have been practicing OB/Gyn for over 35 years and

> caring for women (and now a few men) with CPP which has become one

of the

> most gratifying experiences of my career. Our practice is growing

rapidly

> and we are hearing so many tragic stories of how CPP has affected the

> lives of these patients and how difficult it has been for them to find

> help (even after undergoing multiple invasive surgeries and testing by

> multiple specialists).

>

> This past year I have teamed up with and am now collaborating with

> Bilheimer, a science writer from Boca Raton, Florida to write a book

which

> is now contracted with a major publisher which will be called " Secret

> Suffering " Our goal with the book and now also website

> www.secretsuffering.com is to raise the consciousness of the general

> public to the prevalence of CPP, how it affects relationships, and how

> difficult it is to find appropriate medical help.

>

> has already interviewed numerous women and men, as well as

gained a

> large amount of info on an on-line survey over the past year, and is

ready

> to complete the writing of the book. We would like to now turn to the

> membership of the IPPS to ask your help by either or both of 2 ways.

>

> 1. Register (free) into our website www.secretsuffering.com and enter a

> few paragraphs in our " expert's corner " or

> 2. Volunteer for a brief 15 minute interview by phone or E-mail to

>

> We are looking for 3 things from professionals in the CPP field:

>

> 1. How and why you got into this field of CPP to begin with...

> 2. Your overall observational commments on what you have seen regarding

> CPP and its effects on relationships

> 3. Your overall impression of how difficult it is for patients with CPP

> to find help and why you believe this to be true.

>

> Please remember that we are not conducting any kind of scientific study

> here but wish to get comments from not only patients who have

suffered but

> also from as many true experts in the field as possible. Some of you

know

> me already, but most of you do not. I am not an academician, but am

fully

> dedicated to approaching the clinical aspects of assessment, listening,

> making specific diagnoses, and carrying out the best treatment plans

> ranging from IC, IBS, Endometriosis, Vulvodynia, Vestibulodynia,

High tone

> Pelvic Floor Dysfunction, Neuropathic pain management, trigger point

> therapies, pudendal blocks, etc. Most of my colleagues here do not care

> for chronic non-cyclic pain issues of the pelvis very well, avoiding

> sexual complaints, and they just don't have the time to spend on these

> complex patients.

>

> However we are seeing very encouraging results in even the most

difficult

> of cases. I strongly feel that training programs need to be established

> within our residencies regarding CPP and that each community have at

least

> a few practitioners involved in a multi-disciplinary CPP center.

>

> In the meantime we think that our book may at least help the general

> public begin to understand what CPP is, how it affects their daily

lives,

> and hopefully how best to go about finding practitioners that can help.

> Your help and your experience could go a long way by just contributing a

> few minutes of your time. We would greatly appreciate it.

>

> Sincerely,

>

> J. Echenberg, MD

> 623 W. Union Blvd. Suite 5

> Bethlehem, PA 18018

> Phone:

> Fax:

> Web sites: www.cpp.medem.com and www.secretsuffering.com

> E-mail: office@... or nancech1@...

>

> Bilheimer

> E-mail: susan@...

>

>

>

>

>

>