Purposeful Research

I was invited to take part in a research study for PGAD. The purpose of the study is to examine all aspects associated with mental and sexual health in individuals with PGAD. 


PGAD has become one of many (and the most) unrelenting symptoms consuming my daily life ever since participating in the Psilocybin clinical trial 2.5 years ago. The damage done to me neurologically has been both torturous and excruciating. 


For those of you who may not recall me opening up about (or are new to my page) this very rare, unbearable, incurable and embarrassing disorder, I will leave you a link here for more information;


https://en.m.wikipedia.org/wiki/Persistent_genital_arousal_disorder


I agreed to participate in this study, for one, there was NO risk involved in doing so and more importantly, I also did it with the hope of helping the research team (made up of psychologists, clinicians, PhD students, and gynecologists at the University of British Columbia and Queens) “understand factors that may potentially inform future psychological interventions for individuals coping with” this horrifying condition; a condition that up until now, has had very little research conducted and has affected my mental health tenfold. 


When I had my initial interview with the research coordinator approximately 6 weeks ago now to learn more about the study and what my involvement would be, she was so appreciative of my time and willingness to share my experiences on such a personal and sensitive topic. I told her I’m the one who is so appreciative of her and her team for taking the time to do this.


After my initial interview, I was sent an indepth and confidential questionnaire to complete regarding my symptoms and history with PGAD. Once completed, they sent me an Amazon gift card as a thank you! Next, I was asked to complete a daily diary that was sent to my inbox every afternoon over the course of a 21-day period, tracking and examining my daily mood and suicidal ideations. I completed this portion a couple of weeks ago and received another Amazon gift card for my time!


Late last week, after the research team tallied my results from my 21-day diary period, they sent me several graphs, each one telling a unique story and providing me with some further incite and interpretation of patterns from my symptoms and experiences over the 3 weeks in 4 different areas including the symptoms themselves, their interference in my daily activities and any trends in my emotions (both negative and positive) dependent on how bad my symptoms were on any given day.  


When I am experiencing a really bad flare up of symptoms, especially ones that feel like they go on, non stop for days at a time, I have tried myself to track whether there is any specific pattern or significance to it. The graphs and timelines they’ve given me certainly can be helpful moving forward. 

There will be 2 more follow-up tasks for me to complete in the coming weeks and months, each with another Amazon gift card as a thank you. Clinical research is imperative in helping with advancements in medical interventions and treatment. This can not be done without people like myself who volunteer to participate in them. My biggest regret in my life at this moment has to be the day I agreed to participate in the Psilocybin study 2.5 years ago as it has left me with permanent neurological damage and I swore I would never do it again. I have since turned down 3 other studies as I was not comfortable with the process and couldn’t take any more chances with my health. Can you really blame me? But I know how important these studies can be and I really want more than anything to help make a difference in some small way which was why, this opportunity felt like a necessary one due to the lack of research or available treatments there have been up to now and I was not asked to ingest anything, shave my head or give up too much of my time for it, and of course, who here doesn’t love the gift of Amazon as a token of someone’s time and appreciation. 


#pgad #clinicalstudy #amazongiftcard #appreciation #mentalhealth #wellness #vulnerabilty #research #dailydiary #results #Psilocybin 

Author: Kim Fluxgold

Wife, mom of 3 beautiful children, dog lover, creative sole and children's book Author. Sharing my journey with depression and anxiety through blogging in hopes of educating and ending the stigma. View all posts by Kim Fluxgold