u/Awkward-Fox-6559

After 5 years in and out of more hospital, doctor, and specialist visits than I can count being dismissed, gaslit, and told its just IBS, they finally decided to do an MRI and FINALLY have my diagnosis: stage 4 diffuse adenomyosis plus a side of endo (not sure what stage since MRI can’t really determine that.) What now? I honestly was fully prepared for the endo diagnosis but the adeno came as a bit of a surprise and my doctor said it’s quite severe.

I’m currently on continuous birth control to stop periods (Nikki, aka Yaz) but am still having vasovagal presyncope episodes pretty regularly (complete with blood pressure drop, chills, cold sweats, dizziness, vomiting and pooping on the floor, and being unable to walk or speak full sentences). Beyond the episodes, my daily pain is between 1-3 and is mostly discomfort that I can tolerate. Pain after orgasm is a 5-7 so I just try to avoid those these days.

My question is, does anyone with stage 4 have an advice? Is hysterectomy my only option at this point? Is stage 4 too severe to bother exploring any other options?

Please help 🙂🙏

After 5 years in and out of more hospital, doctor, and specialist visits than I can count being dismissed, gaslit, and told its just IBS, they finally decided to do an MRI and FINALLY have my diagnosis: stage 4 diffuse adenomyosis plus a side of endo (not sure what stage since MRI can’t really determine that.) What now? I honestly was fully prepared for the endo diagnosis but the adeno came as a bit of a surprise and my doctor said it’s quite severe.

I’m currently on continuous birth control to stop periods (Nikki, aka Yaz) to stop periods but am still having vasovagal presyncope episodes pretty regularly (complete with blood pressure drop, chills, cold sweats, dizziness, vomiting and pooping on the floor, and being unable to walk or speak full sentences). Beyond the episodes, my daily pain is between 1-3 and is mostly discomfort that I can tolerate. Pain after orgasm is a 5-7 so I just try to avoid those these days.

My question is, does anyone with stage 4 have an advice? Is hysterectomy my only option at this point? Is stage 4 too severe to bother exploring any other options?

Please help 🙂🙏

Hello endo community! I just got my MRI results yesterday and my appointment with my specialist to go through the results got postponed, leaving me to spiral down the Google rabbit hole in a pure state of anxiety lol. I am 100% confirmed to have a fibroid as well as adenomyosis (which wasn’t even a suspected issue so that was a fun surprise) that part of the report is clear. But is anyone able to help decode this part? Really wish they translated the doctor jargon before posting results in the patient portal 😆

Here’s the MRI analysis that I’m confused about:

Regions of fibrotic appearing thickening in the pelvis suspicious for endometriosis:

Anterior compartment: None

Middle compartment: T2 hypointense thickening along the right greater than left aspect of the pelvic peritoneal reflection extending to the region of the torus uterinus (3:13, 14 and 5:7, 11, 15), without associated intrinsic T1 hyperintensity.

Posterior compartment: None

Any insight would be appreciated! I’ve been having acute vasovagal response episodes for 5 years and am so eager for answers. 🤞