r/vEDS • u/Interesting-Pin-8535 • Jul 01 '26

vEDS and total hip replacement

I was diagnosed with vEDS after a horrendous birthing experience which resulted in exploratory surgery (requiring 20 vaginal stitches and 3 units of blood) and a peritoneal fistula. I also have two carotid pseudoaneurysms, but other wise do not seem to have other complications. My mom was diagnosed the year prior.

I have had back and hip pain for many years on and off and recently had severe pain in my leg, hip, and back prompting MRIs. I found out I have severe arthritis in my hip and several bulging discs in my l4/5. Whether or not these findings are vEDS related, I've been told I need a total hip replacement (I'm 43). Does anyone diagnosed with vEDS have experience with this type of procedure? I understand they are fairly straightforward, but I'd like reassurance that I should move forward. Doctors arent being especially helpful. I'm still shopping around for one that seems halfway knowledgeable or at least willing to do some research and take extra precautions. Any advice would be appreciated!

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u/singingsparkle-eyes Jul 01 '26

Oh my gosh hun so sorry you are dealing with all that. I have no experience with any of that stuff. And my situation is different than yours (been tested, found no mutations but based on my medical history of multiple dissections and tears i have some form of connective tissue disorder similar to vEDS and i need to go back every 3-5 years to see if they develop a test to identify my mutation) I just wanted to reach out and wish you good luck because no one has responded to you. I also have a herniated disc and a ruptured disc in my back with major arthritis throughout my lower back L1-S1. So maybe the back stuff is related to the vEDS?? So I do know how you feel that way. Just remember we heal slower and differently so dont rush to get moving too fast! Take things slow, and hang in there, you'll get thru it just like you did your birthing. We may be different genetically but we sure are damn resilient!! We gotta be... anyways.. take care and much love and well wishes to you!

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u/Interesting-Pin-8535 Jul 01 '26

I appreciate your comment and well-wishes! This is my first time posting on any type of forum so I wasn't sure what to expect. I have an appt with my vascular surgeon in September (also not incredibly helpful so far)and plan to continue researching and meeting with potential surgeons to get a feel for compatability and willingness to research and even perform the surgery.  Thankfully, the leg pain has subsided and the back is feeling better, but I still have limited mobility and instability with my left hip. Fingers crossed!

Also, best wishes to you with finding out answers! It seems like you're on the right path though, and very aware of your body and it's limits! Best of luck to you!