My prayer warriors, we feel like we are so close! Not a definite diagnosis yet, but multiple experts believing we have an answer on what's causing my chronic pelvic pain, just need that final imaging and final doctor to say yep. We knew it was EDS, but it's even more specific than that and what other problems it could also be causing like POTS. I had my pelvis MRI scan last week, but report came back normal. It's good news that it didn't show anything else that would be causing my pain and is more evidence it could be Pelvic Congestion Syndrome (PCS).
I know most of these rare diseases I haven't even heard of so if PCS is new to you, this is the best article to explain what it is, how to get diagnosed, and how to treat. We are hoping for the diagnosis because a small minimally invasive surgery can be done to help the problem and a lot of people become pain free. The video above is actually the doctor who would be that final doctor and is an interventional radiologist. This was him at an EDS meeting with my cardiologist talking about what his patients have usually gone through before they finally get to him. It has been so rewarding for him to actually listen to them, believe their pain, and fix it.
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