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The Endometriosis Foundation

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out of options to try- please send recommendations

Agarules profile image
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hi everyone,

posting in this forum today because after seeing countless doctors and getting no answers on what might be going on- I went on a rabbit hole to research in depth some of the specific symptoms I have. I’m 23 years old, which is why a lot of the doctors I’ve seen kind of toss my symptoms aside even when they persist, they say I’m too young to have this or that, and I get it, but that doesn’t change how I feel physically or provide any form of answers. I’ve had a multitude of general blood work done, all come back clear, had a CT scan of my head, neck and back….also clear from what I’ve been told, and just recently a chest x-ray because I’ve been struggling to catch deep breaths…my breathing is super lazy and shallow and i can’t understand why. I’ve had some tightness in my chest for a while now, stinging pain that randomly shocks me near the rib cage area or under my breast, all primarily in the left side of my body (my left, but other people’s right side if they are facing me). My menstrual cycles have become increasingly heavy, painful and overall lead me to feel so fatigued and out of energy, all I want to do is lay down, sleep, and stay inside. In particular, my last cycle has been the worst because all these symptoms have gotten that much worst- I feel so tired, my rib/lung area, head and neck hurt on that side I specified before & It almost feels like I have allergies 24/7 but allergy pills don’t help, and I’m not sneezing, it’s just that same feeling of fatigue and I get nauseous at random times especially when I’m full or my stomach starts to hurt or get hungry. I get full easily, and even eating has become kind of a hassle cause i feel nauseous throughout the day. All of it, from what i can tell, gets worse around the days of my cycle, and even slightly before and after. I’m not sure what else to do, and I suspect it could be something like endometriosis but I don’t know what kind of doctor or consultant to go to in my state (Texas). As I’ve gone to 2 different PCPs, a pulmonologist & a gynecologist and nobody has been able to give me any clarity on the situation. If anyone on here lives in the U.S or more specifically in Texas or even if you just have any recommendations on how to consult about this specifically or got diagnosed, please feel free to reply !

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Orange8 profile image
Orange8

Hi Agarules- So sorry to hear about your pain and that you haven’t had much luck with doctors. I was in the same boat three years ago, experiencing debilitating pelvic pain that would send me to the ER, and seeing countless doctors who weren’t able to help. I ended up moving from California to Portland, OR, where my sister lives, so that she could take care of me (most days the pain was so bad that I couldn’t leave my house or get out of bed). Long story short, I eventually found a surgeon there who specializes in chronic pelvic pain and she immediately clinically diagnosed me with endometriosis based on my symptoms. She put me on birth control to help with the pain but I still had severe pain, so she recommended laparoscopic surgery to remove endometriosis (this is the only way to truly diagnose the disease, because the doctor goes in with a camera to see everything and removes any endometrial tissue that they see). I ended up doing the surgery this past May, and it turns out that I had stage 4 endometriosis. :( I’m so glad that I did it, though, because I finally had a diagnosis to explain my pain. Unfortunately after recovering from surgery, the severe pain came back, so my surgeon recommended an IUD insertion to more directly target the uterus, where I still have endometriosis that couldn’t safely be removed during surgery. So that’s where I am now (just got the IUD inserted a few days ago). Fingers crossed that this will help. I recommend that you find a doctor/surgeon where you are who specializes in chronic pelvic pain if you can, because this is the only way that I finally got help, a diagnosis, surgery, etc. (And it sounds like, based on your symptoms, that you might even have endometriosis on your diaphragm if your breathing is being affected.) Anyway, I hope this helps. I know how frustrating it is to be in pain and not have any answers, so I hope that you can get some answers soon. Sending you hugs!

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