Health Organization for Pudendal Education

I received this email from the National Vulvodynia Association:

The Institute of Medicine, charged by the Secretary of Health and Human Services to conduct a consensus study of our country's current state of pain research, medical management and education, is seeking comments from chronic pain sufferers and medical professionals who treat chronic pain disorders pertaining to:

(1) Barriers to medical care;
(2) Opportunities to improve pain care; and
(3) Groups that may not be adequately treated for pain.

We encourage you to submit a public statement by March 31st at: http://www.surveygizmo.com/s3/449095/Pa ... ment-Form. When doing so, please be sure to name the specific pain disorder(s), e.g., vulvodynia, that you suffer from and briefly summarize its impact on your health and quality of life.

Here's our chance to voice our concerns about lack of doctors and care for PN!

Faith, I got the same email, and was very excited to see it. My problem is I feel like my dr diagnosed me with vulvodynia as a cop out. Basically, your vulva hurts -- here's some pills. So I just hate that diagnosis and the word just turns my stomach.

I'm sorry you feel that way Griff. I understand your concerns. I think that's why there just needs to be more education about vulvodynia (including vestibulodynia and pudendal neuralgia, which is really the two types of vulvodynia) because many doctors are undereducated and just try to lump them all together. It's a new area of reserach and medicine really so we are unfortunately on the cutting edge of it I think.

Faith,

A HUGE THANK YOUfor posting this link! You know my loud mouth will be fillin' it out!!

Be blessed today, and with lower pain,

A's Mommy

Faith,

Just checked the link and it is not working. Please re-post.

TY,

AM

Here you go

http://www.surveygizmo.com/s3/449095/Pa ... mment-Form

Thanks much, Griff!!

Griff522 wrote:Faith, I got the same email, and was very excited to see it. My problem is I feel like my dr diagnosed me with vulvodynia as a cop out. Basically, your vulva hurts -- here's some pills. So I just hate that diagnosis and the word just turns my stomach.

I agree with you, Griff. I was also diagnosed with that at one point in time and because it sounded so ominous, I was like, "OMG! What IS that"???? I also got (2) vague answers about how it was some kind of "pain syndrome" (<----- I hate the word syndrome now, too!) that no one knows why it occurs and it can only be "treated" with medication. I was also told that this was something that rarely goes away. Same with my "visceral hypersensitiviy" diagnosis.
Faith and Griff - Thanks VERY much for sharing the link!!!!!
Warm regards,
Karyn

I just completed the survey using a pseudonym. It is a good idea for all of us to do so. Respondents are required to post an email address and after setting one up using the pseudonym, I was able to complete that section.

Lernica

Just completed the survey. I think it is very important to have as many people with pudendal neuropathy as possible complete this survey.