MY EDS Challenge Day 15- Diagnosis Journey in Life with Ehlers Danlos

  • May 15, 2022, 10:52 a.m.
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  • Public

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 15- How long was your journey to diagnosis?

Here is a (short lol) diagnosis video I did for tiktok on my 1 yr diagnose-aversary!
I have had pain issues since childhood and other stuff that didn’t make sense to me since birth. But as I went through life I just thought these things were normal. I had issues with bruising, fainting, digestive problems, and I was wondering why the hell I was always hurting and tired. My main problem was Interstitial cystitis that morphed into really stupid urethral and pelvic pain. Then in 2013, I had a pelvic floor muscle spasm that set off extremely bizzareo neuropathic pain that I had never felt before. I had injured the left pudendal nerve which is the main nerve of the pelvis and pelvic floor. I kept reading how “rare” of an issue it was to have a nerve entrapment but my heart knew this is what I had and I was right. Prior to 2013 my issues didn’t involve nerve pain in this way. Looking back, I think both of my SI joints subluxed because I had bad pain on both sides back there and then the nerve pain morphed beyond my pudendal nerve to the entire left side of the body. I still had all the underlying things from childhood but now new issues. I then started my journey of doctor visits to rule things out one by one. After doing testing and treatments for 7 years I went to phoenix, AZ to have pudendal nerve decompression surgery. He said I was one of the worst scarring cases he had seen out of his 400 surgeries. A 3 hour surgery took him 4 and a half. After surgery, something was still wrong. My lower left abdominal pain was bad, or at least more noticeable. I did more of my own research and with the help of my highly in tune PT’s I had a veinogram with intravascular ultrasound to determine I had a trifecta of vascular compressions. I was 74% compressed in my iliac vein which is maythurners syndrome, moderate kidney vein compression (nutcracker syndrome) and pelvic congestion. This is very common in EDS and dysautonomia as well. These were present prior to decompression surgery as examined by 2 vascular doctors.
I remember meeting someone with EDS in 2015 when I was early in my pain journey but I dismissed the notion that I could possibly have that because it was just too rare. And I didn’t dislocate joints nor was I flexible. But those were just the stereotypes. I also did not listen to my PT’s who were telling me that they felt I had vessel issues because I was scared. (They have a lot of experience with visceral work). So everything came to a head in oct of 2020. I had my veinogram scheduled and the week before the procedure I met with a Native American Healer that was associated with my PT establishment. I also met a new PT who herself had EDS. Each of them took a look at me on separate occasions and told me they thought I had EDS. After speaking to my vascular doctor as well as my primary doctor, they agreed that I had a lot of characteristics of EDS. So from there, I felt like I had finally solved the family mystery.


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