Vessel Pain in Hypermobile Life

Here’s a medical update for those I happen to not be able to update IRL

So in terms of my daily pain..... my neuropathic pain has decreased to almost nothing. This is the stinging, stabbing shooting pain that I used to have EVERY DAY that would not let up.... pre surgery. 2 years post op, that disappeared.

Now, my current pain is more throbbing, aching, stretching type pain. This is more vessel pain. I get a few good hours during the day but it gets bad at night. Sadly before my birthday the vessel pain got worse. Thankfully I was able to get into a new Interventional Radiologist Dec 19th. This is a dr. that deals with veins and other stuff. I have three vessel compressions I found out about in Oct of 2020. One of them I have a stent placed for but the other two haven’t been dealt with yet. I knew I would have to deal with my ovarian veins at some point. They go in and coil them so that they stop trying to pump blood. Hoping this helps with the pelvic pain that still persists. My bladder area also burns really bad anytime I use my pelvic floor for anything. These types of episodes used to happen when I was a kid also but they are much worse now. I am thinking this has been what has been wrong with me all along, even since childhood. But the only way to know for sure is to have the procedures to take care of them.

My new dr. wants to take more imaging of my kidney area where the other compression is. If he does the ovarian vein coiling, it might accidently make my kidney pain worse. So we have to see how bad it really is in the kidney area before going ahead and scheduling the ovarian vein coiling. So I have my MRI on Jan 8th and I will know more information after that.

If for some reason, my nutcrackers syndrome (kidney) compression is really bad, then I may have to do additional research on doctors that do a left renal vein transposition surgery which is mega invasive and would be a much bigger ordeal in terms of time and money. I would like to put off going that route at long as possible. Even if the MRI shows its not that bad, I still may need to do this surgery in the future. The pain has always been left sided for me and it can radiate up to the kidney area. Pretty pissed that my past pain doctors never thought to rule this shit out before doing decompression surgery, but nobody is educated on EDS and the many issues that go along with it.

Last updated December 28, 2023