Health Organization for Pudendal Education

Seeking women who have been experiencing persistent feelings of genital arousal for at least the past 3 months. Participants must be 18 years of age or older and able to read and write in English.

Completion of online questionnaires to assess symptoms, psychological and social wellbeing, healthcare experiences, and sexual and relationship functioning will take 60 to 90 minutes.

For more information about this study, contact the Sex Lab by telephone (613) 533-3276 or email sex.lab@queensu.ca or click the following link: https://surveys.psyc.queensu.ca//PGAD.aspx

All inquiries are completely confidential.

Some people reported that they were having problems moving to the following page in this online survey.

The IT team has been looking into these software glitches, and they apologize for any inconvenience. They also suggested that it was best to do the survey on a computer; they found that tablets could be very slow, and phones are somewhat faster but they do not show the complete question on the screen (so that could be a hassle). Also remember EVERY QUESTION NEEDS AN ANSWER, even if it is NO, or not applicable or decline response.

Women suffering from this disorder are invited to participate, as your input is of great value. Check out the link for more information: http://pgad.sexlab.ca/

PS - one may order a paper copy of the report to fill out.

Dr. Caroline Pukall has been receiving various questions from women who want to participate in the Survey. She agreed to share these questions and her replies with groups on forums or social media who had been invited to participate.

Q: What do you hope to accomplish with this study?

Dr. Pukall: The purpose of the survey is to understand the experiences of women with PGAD in many ways – in terms of symptoms, treatments, and function. With the results from this study, we would like to educate health professionals and the public about this distressing disorder, and understand its complexity so that we can develop effective assessment and treatment strategies.

Q: What is your background that makes you interested in studying women like us?

Dr. Pukall: I have been thinking about PGAD ever since I read the first paper on it in 2001. Shortly afterwards, I saw a client with PGAD through the therapy service in which I worked as a graduate student at McGill University. I was struck by many parallels between PGAD and vulvodynia (medically unexplained vulvar pain, which I was studying at the time): the lack of acknowledgment by health professionals, the fact that this client was not taken seriously by anyone she told about her symptoms, the lack of information about the condition and how to treat it, her feelings of being utterly alone, her extreme shame in her symptoms, the fallout in her mood and relationships, and her desperation for validation. It was obvious to me at the time, studying vulvodynia in the way that I was (by examining self-reported symptoms, sensitivity, and brain activity), that we absolutely needed to look at this complex condition in an equally complex way to educate, assess, and treat. We have made many significant inroads in the world of vulvodynia, and would like to help do the same with PGAD.

Q. Why are men not mentioned anywhere in the online survey first page?.... everything seems to be directed at women, when there are several men with PGAD as well?

Dr. Pukall: We plan to study men with PGAD in the next online study that will likely start in the fall of 2016. We are looking forward to learning as much about PGAD as possible in women and men.

Q. When will this Survey close?

Dr. Pukall: The study will end in Feb - March 2016. I think that is a reasonable time estimate to ensure that we have time to get the other groups (control and vulvar pain only).

Q. Why is it taking me longer than 90 minutes to complete the Survey?

Dr. Pukall: We obviously miscalculated how much time it would take. From the responses to the survey that we have seen so far, I see why it has been taking so long: The rich detail that we have received so far is so very valuable for the study. I cannot express my appreciation enough for your dedication and your efforts. Thank you so very much. This study wouldn't be worthwhile without your input. We are learning so much.

Please take the time to look at this video clip made by Robyn Jackowich, one of the researchers, to explain the purpose of this study:

https://www.youtube.com/watch?v=mNDuaq8 ... e=youtu.be

Meet Dr Caroline Pukall in this video clip.
She explains her work and discusses some of the goals for her research on PGAD!

Dr Pukall on the SHRL PGAD Study
https://www.youtube.com/watch?v=uiG8VJH ... e=youtu.be

This thread has close to 700 views! If you actually have the disorder rest assured that any info you give is kept strictly confidential by the researchers.

Participation in the survey is still considered low, so if you suffer from PGAD you can contribute to meaningful research by participating in this study.

Please participate, participate, participate - it will help all PN sufferers who also have PGAD.

Thanks

http://pgad.sexlab.ca/

Researchers have extended this Survey until April 22, 2016. The more women sufferers who participate, the greater value the results - better understanding of the disorder, better education for doctors and the public, and eventually better treatments.

If you qualify to participate, please do so.

http://pgad.sexlab.ca/

This is a reminder that the PGAD online Survey will be closing this Friday, April 22, 2016 at 11:59PM (Eastern).

If you have started the survey, but lost your spot to continue, please contact the Lab to get back on track : http://www.sexlab.ca

For those who wish to commence the survey, it is not too late, as you can do it in mini-sessions during the week and have the lab send you a link of the last page on which you were working.

If you have PGAD, please participate as you will be contributing to meaningful research.