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Feeling worse with balanced hormones ?? help!

Hi everyone ! I’m brand new here. I was on the hunt tonight for somewhere I could find support and came across this site and I’m super excited 😀 Anyway, Ive been struggling lately and was hoping to get some advice. To give some background Ive had autoimmune diseases since I was 11 (crohn’s and graves’ disease) im 23 now. over the years I started getting worse and worse periods and figured It was due to my crohn’s, but last Jan. It got so bad I went to the OBGYN and was diagnosed with endo same day. since then It has still been getting worse. the pain is terrible but honestly the part that really affects me negatively is the anxiety/panic attacks and a gross feeling I get in my abdomen leading up to my period (I seriously can’t describe the feeling lol It’s kind of like bad butterflies).
so that’s a little history, now for my current struggle. I posted about It on reddit before I found this forum so rather than re-typing the whole story i’m just going to upload a pic of my post😀
thanks in advance for any and all responses !!

  1. We're glad you're here and you found us! Since I'm not a doctor, I can't speak to the issue directly, but I did have one thought. Even though your levels appear normal on a blood test, our hormones fluctuate a great deal all through the month. I have mast cell activation syndrome and estrogen is one of my main triggers, so when my estrogen was high during the month as a typical fluctuation with my cycle, I would have terrible mast cell reactions. I wonder if something similar is happening for you. I hope others will have some ideas, and of course, I encourage you to speak with your obgyn or PCP about this. Best of luck! ~Katrina, Advocate

    1. Hi! Firstly just wanted to welcome you! We are so glad you are here and want you to know this community is a safe place to vent, ask questions, reach out whenever you need! With that said, I am sorry you are feeling discouraged. Gosh I know this feeling all too well. Like Katrina mentioned, since I am not a medical professional I cannot shed too much light on this but can certainly share some of my thoughts/personal experience. Again, like Katrina, hormones are certainly fluctuating so it could be that. Also, I have learned that just the few levels the doctors check, sometimes may not be enough. Something similar was happening to be where my estrogen and all that was normal. Well, I fought for a full thyroid blood panel and also for them to check my FSH, and some of those were off. Which ended up making sense as to why I wasn't feeling better even though my other markers came back normal limits. I think the tricky thing with endometriosis also, is that, there seems to always be something going on inside of the body. So it is just so hard to tell what it could possibly be. I would definitely keep fighting for answers and keep talking to your medical team whether it is a GYN or PCP. Please keep us posted on how everything is going. And don't hesitate to reach out to us if you need us <3 Sending you good thoughts. -Kimberli (advocate)

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