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Stage 1/2

A MyEndometriosisTeam Member asked a question đź’­
Washington, DC

Hi everyone! I know I am on here a lot, and thank you so much to all the amazing answers y'all have given me! I am in a weird period where I had excision surgery with stage 1/2, went on Orilissa, pelvic floor therapy, and diet changes and I am still getting awful flares. Is this just life for those of us with chronic illness or is there anything else I can do? I feel bad complaining about pain at only stage 2, and wondering if additional surgery would help or not because I don't know how much I… read more

October 2, 2023
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A MyEndometriosisTeam Member

Navita is right- every body responds to endo and their pain differently. The stage doesn’t matter too much; if you are in pain then you are in pain.
I honestly have been struggling a ton too. I have yet to roll into surgery but what I do know is that I could very well be a stage one, or worse not even find anything, and still have the pain I deal with. It sucks.
I’m biased here because this is working a little for me but a good next step could be getting ahold of a naturopath to test your hormone levels and blood levels if your body is lacking anything that you could easily supplement. Another option to rule out could be a food allergy test. You could even go as far as to get a fecal test done to rule out anything gut related that could be causing pain or discomfort. I know a lot of these next steps aren’t widely suggested in western medicine but would be worth it to cast a wide net just in case. Our bodies are very mysterious and pain can also show up in different ways in the body- such as referred pain.
I’m really sorry you’re going through this and sorry for the book of a message. It could be partially what you deal with from here on out but there is hope for relief. Chronic illness / this disease is.. awful. You’ll likely have good days and bad days, but I hope you feel so much better very soon!

October 2, 2023
A MyEndometriosisTeam Member

Hey. Sorry to hear about your pain. I am at stage 4 and to be honest at stage 2 the pain was the same. The stages dont matter when comes to pain because research shows that this can be painful from the get go. Dont feel bad about complaining, be here ofter or otherwise, your pain,our pain isnt easy to deal with. Please discuss with your MD, to see what's the next step. Hang in there 🙏

October 2, 2023
A MyEndometriosisTeam Member

Hi! I am kind of in the same boat. Stage 2 4 months post op but still in pain. I just wanted to let you know don’t feel bad, your pain is valid 💗 I’m still trying to figure out what else helps.. I don’t know if birth control is an option for you. Maybe talk to MD

October 2, 2023

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