Looking for advice

Hi, new to the forum as I’m looking for advice.
I went to see a doctor around three years ago as after months of nagging back pain, I woke up one morning to a really sharp pain in my spine plus nerve pain/sciatica type pain down legs, pins and needles, numbness in the “saddle area and I couldn’t fully empty my bladder.
Meddoc Dr assessed me and immediately sent me to surgical assessment unit suspecting tethered cord. I have hypermobility/EDS/marfans so have frequently been told my spine is hypermobilr and that’s the cause for the pain.

Sent straight through for MRI supposedly of entire spine (now found out they only did thoracic and lumbar) no tethered cord found so was told scans were clear and to go see my GP for further investigations. Only I’ve now found out after asking for my medical notes due to unrelated issues, that cauda equina was found on that very scan with A&E asking for urgent upper back/neck MRI to be done and urgent orthopaedic referral. I was aware of none of this, Gp never made the referrals and instead referred me to physio 😳

I’ve been backwards and forwards since, no improvement in symptoms/pain. Even morphine doesn’t touch it.
I’m pretty concerned about the damage now being permanent and am going to change GP and ask for that referral to be made ASAP

Has anyone been through similar and can advise?
I’m really worried about the outcome of this