31 Days of EDS/HSD: Day 6- How You Feel About Your Body Today in Hypermobile Life

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 6- How You Feel About Your Body Today

In 2013 my pelvic/ neuropathic pain got really bad. I had stabbing, stinging, shooting pain and allodynia on the left side of my pelvis and tailbone. I tried conservative treatments and diet changes and nothing worked.

The pudendal nerve is the main nerve in the pelvis that controls the pelvic floor. The pudendal nerve has autonomic fibers and sensory fibers which means its attached to the central nervous system. There are also ligaments that surround the nerve. When the ligaments are too stretchy (Which happens with EDS) This makes things worse.

During that time, I was very fearful and mistrusting of my body. There are memories I have during that time where I seem fine, but behind closed doors I was fighting a private battle. I continued to work a full time in person job until 2019. My relationships took a toll as I was preparing for surgery and transitioning to a different job title that was remote.

On March 12, 2020 I had a controversial nerve surgery right before the lock downs. Ligaments and muscles had to be sevored to get to the pudendal nerve to clear away as much scar tissue as possible. The surgery does not help everyone, and my Dr. has to be selective with surgical candidates because he wants the best outcomes.

Post surgery I did daily vlogs to document my progress. The surgery is a long and brutal recovery and the first year post op I was in worse pain than pre surgery. 2 years post op, things finally started turning around and I felt some relief. During my surgical recovery, I realized that I had hypermobility spectrum disorder (HSD) and things I had been experiencing since birth finally started making sense. I got EDS specific physical therapists and gradually the nerve continued healing.

So I can’t explain how I feel about my body today without telling everyone how far I have come. I am now 3 years post op. The surgery didn’t “cure” me but my flare ups are not as long or as intense as they were before. I am finally able to start trusting my body again.