Along with my back problem and the other random aches & pains that come along with EDS, I've been suffering with serious & 'mysterious' hip & groin pain for the past 2-3 years. It has only got worse & worse, so it came as very bittersweet news to find out that I actually have some pretty serious problems going on with both of my hips. Whether it is anything to do with my EDS or related to my back problem I am yet to find out, but hopefully I will know more soon.
The agonising wait has been a long & painful journey. I've been unable to walk very far, stand up for long, sit down comfortably (any longer than 10 minutes is too much!), lie on my right hand side or do many other 'normal' things for far too long now & it is very frustrating. Something just really doesn't feel right in my hips. It was even more frustrating when it felt like nobody was taking my hip problems very seriously and I was constantly being dismissed.
I know those close to me found it difficult to understand just how much pain I've been in. Invisible disabilities suck. I had a physio telling me it was psychological, a specialist saying he thought I was traumatised - and trying to get me to think back to the day when my back problem started (he believed that all of my pain could be stemming from some sort of stress back then). To be told that something so painful and limiting is all in your head is so confusing and petrifying!
When my podiatrist wanted to take an MRI to examine the arthritis in my big toe, I finally got round to convincing somebody into taking an MRI of my hip. Although the appointment had nothing to do with my hip, I think he must have been able to see the pain in my eyes and gave in to my pleas!
The MRI came back that I have an extended labral tear. I've since seen a hip specialist at the Royal Orthopedic in Birmingham who requested x-rays & a CT scan. I am yet to receive the CT results, but from the x-ray results I've been told that I have all the signs of acetabular retroversion and possible femoral retroversion, pincer over-coverage of the femoral head and some small cam deformity. Needless to say all of these terms are very new to me and I've just had to look them up myself for the minute until I have my next appointment on the 7th. Unfortunately, it appears most of these are slightly uncommon as there's not a lot of info out there.
Six
weeks ago I had an x-ray guided right hip injection as a diagnostic
tool. I was expecting to be walking on clouds, but the results were
pretty dim. I had around one day of good relief a week later and then a few weeks with
very slightly reduced pain, but it's still been really uncomfortable!
I'm also slightly confused as UCLH took their own x-rays when I was there for my EDS diagnosis. The lady I saw back in Feb rang me last week & told me that I have hip dysplasia & that Mr Witt would like to see my CT's - upon doing a little research this appears to be different to the retroversion? It seems I still have a lot to learn about what is actually going on with my hips!
After discussing in detail what it all meant, it has become very clear that I am going to be undergoing some sort of hip surgery in the near future & she did mention possible PAO which I have had to get my head around.
I was linked to this video which is a pretty good explanation of what that's all about and it's fair to say that it's a daunting prospect! Especially when I can feel my other hip starting to go...
I now at least feel that I am on the right track with my hip and hopefully from here I can move forward towards getting my mobility back!
I go back to my hip specialist on Tues, so will give an update of what he has to say.
It would be great to hear from you if you have knowledge of, or can relate to anything I'm talking about. Drop me a comment :)
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