Do you know why Tiny Pioneer came into existence? It was because I developed Persistent Genital Arousal Disorder (PGAD) in my late twenties and very quickly decided that mine was not going to be one of those horror stories you read about elsewhere on the internet. I decided that my PGAD would improve and that I would create a hopeful place for others. Interestingly, my post Tiny Tips for Dealing with a PGAD Flare consistently gets more reads than my Introduction to Persistent Genital Arousal Disorder. I consider this interesting because in order to discover the former post, you really have to know what PGAD is and be searching for a solution; by contrast, the latter has the word ‘genital’ in its title and will appear in a wider range of more exciting internet searches, which should, in theory, give it a broader appeal.
One of the things I knew even before I established Tiny Pioneer was that I wanted to discover more about PGAD. The fact it has no single cause or single cure makes it frightening for sufferers; however, I do not believe that that makes it an impossible puzzle or a life sentence. In my opinion, it only means that not a lot is known about PGAD at the moment, which creates an opportunity to learn more.
To this end, I have decided to run a survey into PGAD. The aim of the survey will be to discover trends among PGAD sufferers in the hope of uncovering triggers and alleviating factors that may not have been noticed before. I also hope to identify risk factors and comorbid conditions. The survey will not really touch on the sexual or emotional impact of having PGAD, because I think it’s fairly obvious that it’s not a pleasant experience and I don’t want to ask people to focus on their misery more than necessary! I’m not too bothered about how it makes people FEEL; I’m bothered about what might cause it, how symptoms manifest, and how we might make it better.
A big disclaimer here: I’m not a doctor or health professional and I’m not a medical researcher. It’s probably quite arrogant of me to think I have the credentials to conduct a survey like this. On the other hand, I don’t see too many other people carrying out much research into PGAD and you don’t appear to need any formal qualifications to run a survey. Even if you did, I have a degree in Maths and have in the dim and distant past been required to analyse data, so I think I have the statistical knowledge to make a fairly decent job it. I know not to make questions biased; I know to be clear and make sure there is something for everyone to tick; I know that you need to ask enough questions to be useful, but not so many that people get bored.
I also know that you need a decent number of responses to make a survey statistically viable, which is why I’m not sure how long I will leave the questionnaire on the site for. I will have to leave it open for as long as it takes to get a decent number of responses, which might take six weeks or might take a year. While I’m waiting for responses to come in, I can brush up on my statistics work!
If you have PGAD now, or have had it in the past, I’d be really grateful if you could take some time to fill out the questionnaire. It doesn’t matter whether you’ve been officially diagnosed, or whether you have self-diagnosed based on your symptoms. The questionnaire is open to men, women and children. Younger children may need an adult to fill it in for them and there might be some questions they don’t understand, so if you are filling it in for a young child, just do your best. If you’re not sure what PGAD is, please read this post to learn more about it. You can then have a look through the questionnaire, but please only complete the questions if you feel that you do have PGAD.
Because I’m not sure how long the questionnaire will be open for, I can’t promise you a date by which I will have news to report. I will report back on this blog at some stage though, so you’ll be able to check out the most significant findings (if there are any!) for yourselves. Maybe nothing useful will come of it, but I think it’s definitely worth a try.
I envisage the questionnaire will take about 20 minutes to complete, so you’ll probably want to do it when you’ve got a bit of quiet time to spare. If any of you are on any online PGAD forums or support groups, it would be great if you would share a link to the questionnaire on those. The more PGAD patients it reaches, the more reliable the results will be.
Please ensure you read the instructions at the top of the questionnaire before starting and if there are any aspects of it that you don’t agree with, please don’t participate.
Thank you for your help!
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