They found it during my hysterectomy! I was right and I'm pretty relieved about it.
I was scheduled for a hysterectomy today. It went well, and I came home today. I'm able to eat a little bit and I'm currently working on a chocolate shake from earlier in the day.
Anyway, I had been struggling with getting a diagnosis because they couldn't ever find anything in scans, and they didn't find it in my previous surgery when I had my tubes removed (bilateral salpingectomy) but it essentially runs in my family. I don't know my biological father's side of my family, but my late grandmother on my mom's side had it, my aunt on my mom's side had it (she had it for 17 years and didn't know it), and my late mom had it as well as ovarian cancer (which she died from at 33 years old), which is why I had my tubes removed last year. My little sister is 19 so she might also end up having it, but I pray that she doesn't. But both of us have PCOS/PMOS.
From the report in my MyChart, it says as follows:
"Diffused punctate red endometriosis noted in cul de sac and bilateral pelvic side wall"
I worked medical but only as a CNA, so I'm not able to translate this into layman's terms without help. I googled it and if I understand it correctly, it was deep infiltrating endometriosis which could be why it was missed in all the scans. ★If anyone can help clarify this for me, that would be greatly appreciated!★
They did a cystoscopy and placed a ureteral stent to support the walls of my urethra. I've had incontinence issues since I was 11 (which is when my period started) but it never occurred to me that it could be caused by endometriosis.
I'm just so happy I finally have an explanation for the pain, and I can hopefully live the rest of my 20's out in peace.