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Having doubts about having Endometriosis

I have not been diagnosed with Endometriosis yet but I have started on my journey to find answers. I had an appointment with my primary care doctor to discus my concerns and to give a referral to a specialist. Despite me telling my dr about my pains during my period, pains that sent me to the ER, pains during bowl movements, ect, she straight up told me she does not think I have Endometriosis. I have done research and my symptoms seem to a line with endometriosis symptoms and I know it is not unusual for drs to blow off patients for this (hence why I wanted to see a specialist). I have not seen the specialist at this time yet, but I cant help feel emotional and doubtful of my symptoms after the appointment with my Primary. I have been questioning every symptom and just doubting everything. I keep trying to reassure myself that even if the specialist does not think i have/does not find that I have Endometriosis then it's at least something to cross off the list and a step closer to finding answers to my period pain. I am also getting cold feet about seeing the specialist, though I am trying to push through that feeling. It just has been an emotional time sense that appointment with my primary and needed to get these thoughts off my chest.

  1. Hi there! Firstly, just wanted to welcome you to the community and say thank you for being here. We hope you know that all of us here, are always here to chat whenever you may need. This is a safe place and one where you can vent, cry, laugh, whatever it may be! We all can certainly relate in some way, shape or form.

    Second, I know the journey to finding answers can be a tough and stressful one. Proud of you for getting it started though. Your story is all too similar. Not only to mine but many here. Each doctor I had gone to, told me the same exact thing. I did not have endometriosis, it was all in my head, the pains were just part of being a woman, etc. It angers me how endometriosis STILL is not taken seriously by the medical world.

    Don't let that apt with your primary care doctor discourage you. Keep fighting. You and only you know your body. And if something feels off, you are most likely right. It is scary, I can agree with you there. Not knowing what they will find, if they will find anything. That was how I felt the first time I saw my specialist. But I am so glad I stuck with it, because what I kept trying to tell doctors, was correct. I did indeed have endometriosis.

    Take your time and go at a pace that seems right for you. If you need some time to process before you see a specialist, that's okay! What I did was see a few GYN's first and while many brushed me off, 2 were very caring and understanding towards endometriosis and my diagnosis. So, you can try that as well. I am not sure if you have a specialist in mind yet but Nancy's Nook- a FB group- has a list of specialists you can look through in your specific location and surrounding areas.

    You are not on this journey alone. Please reach out to us anytime you need us. Here for you. Keep us posted on how everything is going, too! Sending you big, gigantic hugs! -Kimberli (team member)

    1. I echo what Kimberli said. We're glad you're here reaching out to community. I agree: don't let that primary doc dissuade you from seeing the specialist. And if the specialist says they think it's not endo, and you still believe in your gut that it's endo, find another specialist. There are so many stories of doctors being dismissive and patients having to fight to be heard and believed. I hope that doesn't become your story and that the specialist gives you the care you deserve. And if it truly isn't endo, I hope the specialist will work to figure out what is causing you pain. Period pain that sends you to the ER is not normal and should not be blown off by doctors.

      Please keep us posted! ~Katrina, Advocate

      1. Echoing what the others have said! Endo is a wild condition- from what I've read on this forum and other online spaces where people discuss their experiences with it, there's a lot that is hugely varied! Having pain so severe you needed to visit the ER during your period immediately sets alarm bells off in my head for endo. The thing too that I've read and that my own gynecologist told me- you can have a very severe case of endo and yet have very little pain associated with it. Or only have a little endo tissue and have crippling pain. When I got my diagnosis I was experiencing little to no pain at all associated with periods. I didn't think I would have endo, and I did- a moderate amount. My point is that your pain is as good an indicator as any that you should check into it, but it's also not a contest of, "am I suffering enough to have this condition?" Like so many of us think initially.

        Like you said, doctors are notorious for writing off endo so as hard as it might be, don't let your doctor's opinion sway you. Your symptoms are real. I would encourage you to check it out too because if you don't have it that's one less thing to narrow out to figuring out what your cause of pain is, like you say yourself! That's the way I looked at it too when I was scheduled for a laparoscopy. You deserve to explore this for yourself! You deserve an answer.

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