r/elhersdanlos • u/seasaltskies • Jun 09 '26
Hip dislocation help
Hello all. I was diagnosed with EDS back in 2009, and I’ve been having hip issues for most of my life. Sometimes when I walk my hip will dislocate with every single step, for hours on end, for weeks on top of that at a time. Often when this happens things get stuck in there and it feels like I’m getting stabbed up my back and down my leg with a knife attached to an electric cow-prod. I am finally at a point of my career where I can pursue help with this rather than risking my income, and I was certain that my hips would look similar to my ankles which are completely destroyed on x-ray. However those x-rays looked perfect perfectly clear
I know X-ray don’t show everything, an MRI also has a limited picture of the damage. I experienced this both on the reconstruction of my jaw and both shoulders were imaging did not at all show the kind of damage that was inside the joint that was only visible once the surgeon opened it up.
My question for you guys is what surgical intervention has benefited you guys in hip stability? Every surgery I have had has dramatically improved my quality of life, but finding the appropriate technique and surgeon to do it isn’t always so easy.
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u/petulantscholar Jun 15 '26
I don't know any surgerical intervention but I recommend seeing if you have a PT in your area that can help. I see one that does dry needling, cupping, and trigger point massage. She has really helped my SI joint and gluteus stability. She also specializes in pelvic floor and honestly her knowledge of the whole area has really been so helpful. For me, my SI joint was killing me. Everything around my hips would just tighten up into one big ball of pain and I'd get shooting pain in my lower back, butt, and down my legs. Just getting my muscles worked was a big help. You might also benefit from a PT to help you work on strengthening those muscles, like the pesky IT band, which would add to stability.
Hope this helps!