Updated: Jun 5, 2020
There is really no easy way to talk about chronic pelvic pain, RGS-Restless Genital Disorder (PGAD), and all that comes with it. I have been diagnosed for almost eight years and I still find it pretty awkward even when talking to doctors. The goal of this blog is to bring a little light on this pretty painful situation. In the eight years that I have known about my diagnosis I have been able to travel to fourteen countries, date and marry my husband, and start my own company. I was encouraged to start this blog during my recovery after my vestibulectomy surgery. I realized like so many time when trying to google about other people with RGS/PGAD I was only finding really sad and depressing links. Hardly any of it was useful. I want to change that. Let's talk more about RGS /PGAD, Pelvic pain, and sexual pain, because it needs to be talked about. Let's talk about the ways and tools to work with it. To make it something small so that we can live big.
Just to start this all off, I'll briefly explain my diagnosis history. In 2012, during my senior year of college, I entered a state of depression and anxiety after some traumatic events that occurred at school. Not only was I filled with extreme anxiety, but I began to feel my body break down as well. I came home for winter break and told my mom I was not feeling right. I explained that I constantly had a feeling of needing to pee even though I didn't need to (state of urgency) and I started to have nightmares and anxiety attacks in public places thinking I was going to pee myself. After going to a bladder doctor, my gynecologist, and a couple more, it became clear we had no idea what I had. These doctors had no answers for me or my mom except that all examinations and test were painful for me to receive (tests that normally cause no pain).
One night I began googling. I was trying to put my pain into words. So I began searching things like, "My legs feel like there are creepy crawlers going up and down" and "masturbation to relieve pain", etc.. This is how I found out that I have PGAD and IC (and all that comes with it). So, I went into my moms room, handed her the computer and said, "this is what I have." My mom is no ordinary mom. She is both a Pediatrician and a single mom (after my dad passed away when I was nine). She is always beyond supportive and understanding. I am very lucky and trust me I know it. Not everyone has the ability to talk to parents about these things. My mom took the computer, read the article, gave me a hug and said, "we are going to figure this out."
My mom spent the night googling and researching. It was not pleasant. There were several articles depicting the amount of pain these girls were in and even leading some to suicide. There was a light at the end of the tunnel, though, and his name is Dr. Echenberg. My mom called the office the very next day and made an appointment to see him two months later.
My journey with Dr. E has been nothing but hopeful, welcoming, and obviously helpful. I began going to physical therapy for pelvic pain, reading recommended books, practicing new breathe exercises, and taking new medication. One year later, I was a brand new person. My anxiety and depression was a thing in the past. Dr. E is a constant encouragement in my life. If ever I need to speak to him or ask him anything he is there ready for a skype call. When I have flare-ups he is always ready with a solution, something that could help me back on the right path.
It has been eight years since I was diagnosed with Pelvic Pain, IC, and PGAD. I am 28 years old and married to the best husband in the world. I have my ups and downs, but luckily, I am able to see when a flare up is coming and what is causing it. It is still a learning process. And there are times where an old trick doesn't work and I need to find a new one, but it doesn't keep me down.
So there you have it. A little start to who I am. I am going to update this as much as possible with products, tools, medications, and suggestions I have found over the years. Please feel free to ask me any questions along the way!
For more information on Dr. Echenberg please see link here: http://www.theechenberginstitute.com/dr-echenberg/