I have a reoccurring pain that nobody can explain.
Hi Doctors of reddit, I’m hoping you can help me out.
I’m 22 AFAB, 5’3”, 205lbs, not currently on any medications, diagnosed with hEDS, POTS, and MCAS - all diagnosed about a year ago, all of which are fairly well managed on my own, but I can’t help but wonder if this might be a hEDS related symptom somehow.
I have a reoccurring pain in my lower left abdomen that none of my doctors can give me an answer for.
It’s been going on for just over 2 years now, it’s on and off, but when it comes back it is SO debilitating that i can hardly walk, get out of bed, move. It’s sometimes paired with thigh, hip, or lower back pain on that same left side, but not always.
I have yet to find anything that eases the pain, i just have to wait for it to go away. Strenuous physical activity and sexual activity sometimes make it way worse, but not always!
In these two years of dealing with it, i’ve had:
TONS of bloodwork
An x-ray of my left hip
A CT scan of my pelvis
An MRI of my pelvis
Internal ultrasound
Regular ultrasound
Colonoscopy
Upper endoscopy
Pap smear
STI/STD panels
And EVERYTHING has come back completely spotless. GRANTED, i don’t believe any of those tests were done while the pain was active and at it’s worst - that’s the hard part about it being on and off, i feel like it’s hiding from me.
I’m just at such a loss. My doctors don’t know where to go from here or who to refer me to next, i cannot keep living like this - putting my life on pause when the left side of my pelvis decides it hates me - and it’s just so baffling to me that i can be in THIS much pain and there’s seemingly NOTHING causing it.
If anyone has ANY ideas, please, please please help me!