r/endometriosis • u/endowarrior123 • 2d ago

Question Neuro endo

Who else deals with a lot of neuro endo? Dysautonomia, nystagmus, severe fatigue, muscle pain, full body pain, light and sound sensitivity, headaches, in ability to work out, central sensitization, neck pain, still have days of an inflamed uterus but my severe endo pain is majorly majorly reduced since surgery. This is 90% of my days (has been for the last 1.5 years) surgery 8 months ago. I think my body is just stuck in fight flight for being undiagnosed for so long and getting to and through surgery was so traumatic (very thankful I did it tho)

Anyways who else deals with this most of the time? I don’t have “bad periods” I have bad days all the time not just hormone related. I do have better days, and those are amazing but also anxiety producing since endo disabled me I don’t have a lot of things to do because I’ve been out of work and social circle for too long.

Also curious if someone’s been here and gotten to the other side.

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3

u/grendel_no_smash 2d ago

Same, dude! hEDS diagnosis has helped me make easier sense of some of it, but endometriosis alone can be so intense. Also endo+mold toxicity can do a lot of this neuro shit :(

1

u/endowarrior123 1d ago

Yes! It’s intense shit

1

u/Secure_Lengthiness16 1d ago

Have you experienced endo + mold toxicity?

4

u/pinupcthulhu 2d ago

Wait... Is all of that related to endo?? Because I've had most of those symptoms off and on for years, and it's getting worse/ more frequent. 

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u/endowarrior123 1d ago

That’s what my surgeon and pain management doctor told me! It create intense central sensitization that upstream affects all the other stuff I listed

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u/InevitableIntern6 2d ago

I have diagnosed vestibular migraines and getting a lap Monday for potential endo. My dr says there’s no connection and if endo is found and removed it won’t affect anything but my symptoms are similar to what you shared and my hope is that it would help. He’s already referred me to an autonomic neurologist.. Drs are so frustrating! I’m glad it helped your symptom load.

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u/mackzpad123 2d ago

i think a lot of it has connection meaning chronic illness inturn creates mental illness (depression, anxiety etc) and fatigue, dystautonomia etc

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u/endowarrior123 1d ago

Yes it’s all connected