Hey everyone,
I’m a 28-year-old woman and I feel like my body is deteriorating, and I’m desperately trying to understand what’s going on.
I’ve always been extremely active (dance, gym, pole, strength training), and movement has always been a huge part of who I am. Right now I’m off work because walking, standing, and getting through daily life has become increasingly difficult.
I’m hoping someone here has been through something similar, or can point me toward possible conditions, specialists, or testing that helped.
My timeline:
At 19, I started developing deep pelvic pain. I had multiple tests and was told nothing was wrong, just do physio.
I did physio, but nothing changed.
Around 3 years ago, I started developing severe pain in both hips that radiated down both legs. At first it mainly happened with exercise, but it gradually started affecting daily life.
I saw sports medicine and was told it was probably muscular and to do physio.
Over the past 1.5+ years I’ve been extremely consistent with:
multiple physiotherapists
daily strengthening
mobility/stretching programs
chiropractic care
osteopathy
massage therapy
Despite being very compliant, I’ve continued to get worse.
Then in November I finally had an MRI, which showed:
bilateral partial hip labral tears
hip dysplasia
I saw a hip surgeon, but he said he didn’t want to operate and told me to continue physio.
Since then I’ve tried:
cortisone injections
Cingal injections
multiple pain medications
None of them have given meaningful relief.
More recently:
A new physiotherapist noted that I appear hypermobile in my:
knees
elbows
spine
This opened up a whole new set of questions for me.
Current symptoms:
Deep hip/pelvic pain
Pain radiating down both legs
Back fatigue/pain, especially standing
Legs can feel heavy, weak, or “wooden”
Sometimes one leg feels almost disconnected from my body
Pain worsens with standing, walking, being upright for long periods
Some nights I can’t sleep from pain
Pain medications often don’t touch it
I’m currently off work because functioning has become so difficult
Emotionally, this has been devastating. I feel like my world is getting smaller and smaller. I miss dancing. I miss feeling strong. I miss feeling like my body belongs to me.
I’m starting to wonder if something bigger is being missed?? Possibly hypermobility/HSD/hEDS, nerve involvement, SI joint instability, connective tissue issues, vascular issues, pelvic floor dysfunction, autoimmune/inflammatory conditions, or something else.
My questions:
Has anyone with hip dysplasia/labral tears had symptoms this severe?
Did hypermobility end up being part of the picture?
Did anyone have “normal” doctors/physios miss something bigger?
What specialists finally helped you?
Were there tests that finally gave answers?
I’d be incredibly grateful to hear from anyone who’s been through something similar.