Received this email from National Vulvodynia Association:
The Sexual Health Research laboratory is looking for women who fit into only one of the following groups to complete an online survey:
Women who do not have a chronic pain condition (Pain-free group)
Women who currently experience vulvar and/or abdominal and/or pelvic pain (Vulvar/abdominal/pelvic pain group)
Women who have previously experienced shingles and still feel pain even though the rash has healed (Post-shingles group)
The survey will take approximately 30-45 minutes to complete, and all information is completely anonymous. To thank women for participating, there will be four draws (for $50 prizes) each month. Participants must be fluent in English and 18 years or older.
If interested, please contact the Sexual Health Research Laboratory by phone (613-533-3276) or email (SHRL@queensu.ca). Alternately, feel free to visit the following website to access the survey directly: https://surveys.psyc.queensu.ca/Checkbox/neuropain.aspx
All calls and email contact are treated with the strictest confidentiality. A paper version of the questionnaire is available upon request.
It took me over an hour to do the survey, but I think it is really important for those of us dealing with pelvic pain to present our stories so that maybe additional treatment will be found for this condition. Plus there is a chance to win $50 It focuses a lot on genital pain. I have sacral pain and all over myofasical pain as well, but it allows you to write in information so I tried to use the words pudendal neuralgia as many time as I could to get the word out!
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Ahhhhh, what a survey. I just completed mine and mentioned PN as much as possible.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
It focuses a lot on genital pain. I have sacral pain and all over myofasical pain as well, but it allows you to write in information so I tried to use the words pudendal neuralgia as many time as I could to get the word out!