Undiagnosed Hip Pain

Hello there. So sorry to hear about your pain, etc. I suffer from something that may indeed be exactly what you have (very rare and little medical info to be found unfortunately)...Google this: Bone Marrow Edema Syndrome (BMES). I've had it in my ankle for two years (extremely rare in ankle, but most often occurring in the hip). A drug called Iloprost (spelling?) is often used to improve blood flow/reduce pain. Find the best Osteo practice in your area and insist on a doc with BMES knowledge/experience. It took me SIX doc's to find one who even knew what it was. Good part is that although it can reoccur, it does go away with time. All the best to you...~Brady

Thanks for your help I will look into that I see my orthopaedic specialist on the 28th so we we will go from there

Was the MRI of just your hip?

You could have avascular necrosis. Most docs do not know how to diagnose this or see it on xray. You may want to see an orthopedic specialist who specializes in AVN and knows how to treat it.

Yes I have had one MRI with Contrast
and I have have had an MRI Arthrogram of my hip

Currently we are looking into a sports hernia if it is not it than it could be adductor snapping hip syndrome which is more rare than abductor snapping hip syndrome.
I am currently waiting for a referral to the surgeon to see if that is what he thinks it is. I am still not sure!

Snapping band you usually get a click or clunk have you asked about labral tears or hip dyplasia? Finding a good hip surgeon can be hard...

We thought it was a labral tear and I had an arthrogram of my hip. My doctors are actually great they just do not have an answer

I'm new to the community, but see many similarities between your situation and my experiences. I am also in my 20's and used to be very active. I was diagnosed as having a snapping hip syndrome two years ago and went through physical therapy for it..... we determined that it was not the appropriate diagnosis after many painful sessions of physical therapy.
The pain gradually got worse (extending down leg/foot and increasing in strength) and has continued for the past 2 1/2 years. I've been to four different states within that time frame and finally was sent to Mayo this year. I've had a hip arthroplasty and am currently in the recovery process. I'm glad the labral tear has been fixed, but my big concern is that the pain I've had for 2.5 years is still very present and no one knows what it is from. My gut tells me that it is related to sciatic nerve.... but I don't know. I even pondered endometriosis involvement.

I was reading your post assuming you were older and then I got to the point that you're 23 and felt instantly connected to you.

I'm 25, my pain began at 20.

I've had even more procedures and drugs and therapies than you have with no results, I used to be active and otherwise healthy and have no family history or reason for my paralyzing pain!

Have you tried any stronger pain killers? I take a ton of oxycodone every day but it's the kind without Tylenol, so it's less harmful on organs and I will gladly become tolerant to oxycodone than lay in agony.

Do you see a Rheumotologist at all? Mine put me on Enbrel and I went from being unable to walk without crutches and needing help just to go to the bathroom to being able to walk without a limp.

Also -- did your MRAs show any labral tears? I had bilateral tears which was thought to be the cause of the pain but after two failed surgeries it's not -- but could be for you.

Now I am looking into Ehlers-Danlos syndrome with yet another specialist (a geneticist) because I have very hypermobile joints. I feel your pain, especially at our age. It may seem like you've tried all the meds but you have just begun, you may able to find a combination that works for you. I personally have been all the meds you listed and they all just felt like placeabos to me...abolutely no help.